5 things I've learned in 5 years of chronic illness

So last week marked 5 years since my world changed beyond recognition. But rather than crawl up into a ball and blub about it I have decided to try focus on the positives. Because believe it or not there are still positives. I have learned so many lessons in these past 5 years, and got to know so much more about myself as I've faced these challenges. I'm sure I could make a much longer list of things I've learned throughout this experience but these are the ones that I thought of instantly. And in all honestly my cognitive functioning is pretty foggy lately, so I'm lucky I've been able to write a post at all. Anyway here are the 5 lessons I've learned from being chronically ill for 5 years. 

1

You are far stronger than you will ever give yourself credit for

Most of us really don't know how strong we are until being strong is our only option. If you are a regular reader of my blog you will know of my mental health battles prior to becoming chronically ill. Because of that, I fretted so much about how I would cope when I received my M.E and later my fibromyalgia diagnosis. I thought I would probably fall apart. Losing my independence, my career, friends, all I'd trained for. It's true that you will grieve for your former life. But illness is consuming and life becomes about coping with what it throws at you on a daily or hourly basis. Whilst also trying to keep your sanity. And to be fair your pain levels under control.

 There are of course times when you can't hack the pain, when you cry at how the simplest of tasks has left you completely depleted. But on the whole you manage. You just do. One of my favourite quotes I like to use as a kind of mantra when life seems unbearable is: 'On particularly rough days, when I'm sure I can't possibly endure. I like to remind myself that my track record for getting through bad days so far is 100%. And that is pretty good.'

Cope with it one minute at a time and try not to let yourself get too far ahead of yourself, imagining the worst. That only adds more stress to an already stressful situation. Also the odd wobble, sobbing self pity fest is perfectly healthy. Sometimes it takes those moments of grief to actually make us appreciate just how well we're doing.

Source: Pinterest

2

Friendships may come and go but you'll learn who really has your back

This is probably one of the harder things to come to terms with. Especially when you feel you've done nothing wrong, except become ill. Which obviously is not your fault. It can be heartbreaking, because this is a time when you need people on your side. But it's the being on your side part that's important, if they're not making the effort to try find out how you are or have some compassion for what you're going through then it's clear what side they're on.

 It can be really difficult standing up for yourself and cutting a former friend loose. Obviously you then fear having no friends at all and making your world even smaller. So it may take time. But in time you won't miss them.

 I know in some cases friendships have fizzled out due partly to my own doing, and again I don't mean becoming ill. Rather, that illness does change you (and that is probably a whole blog topic on its own) you don't feel part of your old world anymore and as a consequence you can feel that you no longer have anything to contribute to conversation. "So what are you up to?" "Err nothing." And cue awkward pause.

The important thing to remember is the amount of friends you have is nothing in comparison to the quality of friendships. Cherish those that understand that making plans may come with conditions, and you may need to cancel them at the last minute, not because you want to but because you have to. That if you don't reply to a message straight away or read it but don't respond instantly, it does not mean you're being ignorant, or don't care what they have to say. Also remember that whatever people think they know and choose to judge you on, only you have the truth. And that actions speak louder than words.

Most of my friendships now are with people I've got to know through the spoonie community. They're my first port of call when I need help. It's strange because obviously most I've never met, but I don't doubt their friendship any less for that. It's what works for our current situations but it's more than illness that bonds us. I do often laugh out loud at an image in my head, that if I were to get married (to my imaginary boyfriend) of myself and a trail of bridesmaids rolling down the aisle.

3

That smiling and laughter are medicine for the soul

Simple, but true. When you get diagnosed with a chronic illness, as you can imagine, it's disheartening and like I said you do go through a grieving process. You wonder if you'll ever laugh or smile again. But somehow you do and hopefully you will smile or laugh at least once a day. My not so secret, secret is to focus on the little things. The fact you've took less pain medication today, you've seen the cutest meme on Instagram. Eat something yummy. Have a mini pamper session. Or put on your favourite TV show or film, even though you've seen it a thousand times but you know it will make you laugh. I've got to the point where if ever I need both my parents to help hold me up and support me to walk I start singing 'let's all do the conga,' because I'd rather laugh and smile at how grateful I am to have such supportive parents, than think this is so depressing.

I already have some blog posts on happiness, in particular my 'happiness is...' series if you would like some ideas. I hope to continue writing more on happiness, confidence and self worth soon.

Source: Pinterest

4

To grab opportunities and have adventures

Obviously this is something that is subjective to each sufferer because no 2 are alike and we are all affected differently or have differing life situations. It's true though that we all must learn to see that achievements are not just life's big milestones, but the milestones you achieve with your health. Getting downstairs for the first time in months, being able to concentrate enough to read a book, walking into a restaurant rather than have to be wheeled. These are no less worthy achievements.

My own personal experiences have shown me that every now and again if an opportunity comes along and I feel I could scrape by then I go for it. So far I am lucky enough that that has included some holidays and even an amazing experience of being in the studio audience of Strictly. You can read about these experiences here on my blog.

 Yes, there's a lot of planning involved and usually smiling through extreme pain. As well as the agony of payback in the form of post exertion malaise. But making new happy memories that you can look back on with fondness, will help you to cope on those bed bound days. There is no such thing as a break from chronic illness but every once in a while you can try divert your attention. Within your limits of course. Life is far from over. It's about learning to live in the moment, taking advantage of your better days. And ultimately, knowing that because there is no cure, that you cannot delay your chance at happiness, you must grab it as it happens. You can't put off being happy until you are better. You will only rob yourself in doing so.

5

That you will have a whole new self respect for your body

You'll learn to read it and continually self assess. As well as a whole improved view on body image, because you are no longer as wrapped up in what your body looks like and hating on it. But rather what it can do and how much it puts up with. You are now so grateful for it for surviving through years of pain and for the times it allows you to have little adventures. It deserves your love and respect not hate and disdain. As ever self care and having a healthy relationship with your body is about what you put into your body, as well as being careful how you treat yourself physically and mentally. Your body and you yourself are doing the best you can within these circumstances, so treat yourself with care and respect.


As I'm feeling generous and I believe it needs saying, I'm throwing in a 6th nugget of wisdom. And that is: Healing and recovery are not linear. There will be peaks and troughs, better times and worse times. Times you cope better mentally than others. Set backs and relapses. So, never beat yourself up that you are not progressing as quickly as you would like. That you could do something one day but not the next. Remember illness, especially where PEM is involved, doesn't work like that. Never, look at everyone else's achievements and feel inferior, because they are making their own path not yours. Rest when you need to rest, cry when you need to cry and move at your own pace. Celebrate each achievement and give yourself lots of credit and praise for them, because it's you that's doing all the hard work. And yes, putting up with a chronic illness certainly is hard work.

What are the biggest things that you have learnt from becoming chronically ill? Let me know in the comments.

Until next time
Sian
X

It's not always ME

I have seen many a tweet or post from people with M.E and other chronic illnesses about doctors lack of understanding and 'horror stories' about appointments and hospital visits. And I'll be honest, for a while I gave these posts too much head space. I started to believe that I simply must suffer in silence and accept that my health was getting worse and that no one could do anything.

Until one day when even breathing felt like too much hard work I declared that this was madness. Because if someone that was otherwise healthy felt half this bad they'd be calling an ambulance or at the very least seeing their GP. Yet because I have a chronic illness and think I know what is going on I simply have to put up with it and keep quiet. Well I wasn't having that! It occurred to me how ridiculous it was to be suffering so much yet my GP obviously had no idea how bad things had got. And if I didn't tell them, how could they know? 

What was more ridiculous is the fact that I've always had good experiences with my GP's, they diagnosed me early, have made referrals to OT, home visits and helped me find a good balance of medication. I've not had the bad experiences others write about and fear will happen again.

The thing is though regardless of your medical history we all need medical attention from time to time. Whether it's to simply review medication or make referrals because our illness is becoming more severe. We cannot do what I've actually seen some suggest in keeping clear of doctors. This is not to say we should accept poor treatment. Far from it. There are good doctors out there that do understand M.E, it's a matter of finding them. They're the ones we should be taking advice from, not some naysayers on the internet. It must be so hard on them too, to see so many patients asking for help but the science and research is so far not progressive enough to help them. When all they can do is help keep us 'comfortable,' try to manage our symptoms and rule out other things.

Because that is another reason why seeking medical attention can be so important.  Sometimes it's not going to be 'just M.E' 'just fibromyalgia' or 'just IBS', etc etc. I think many people avoid getting help because they feel they'll be told it's just (insert known diagnosis). To be fair in some cases it will be. Or you will be sent for some standard blood tests or an ECG etc only for them to come back 'normal'. It can be disheartening, believe me I know how it feels, especially when you feel so far from normal. You just want answers. Or something with a quick/easy fix.

However, when it comes down to it this is also the best we can hope for. We already know we have that condition and probably have built up a wealth of knowledge and coping mechanisms to help. We also know recovery is an ongoing process filled with peaks and troughs. Having recently been on the other side, where test results came completely out the blue and needed looking into urgently, I can tell you being on that side of the fence is certainly not the better option. So my opinion on negative results has certainly become more 'phew what a relief.' Hopefully, I'm doing okay though.

Sometimes we might even get some answers that can be more easily solved, our iron or vitamin D levels might have dropped, which can be fairly common if we are housebound and not getting all the nutrients we need for whatever reason. So a short course of them can help us get back on track.

Then of course, like I said there are the times when it's not going to be just M.E etc. And obviously we can't know this until it's confirmed. But what I feel it's important to say is, we are not immune to other illnesses, chronic or short term. From common coexisting conditions such as many M.E sufferers also being diagnosed with fibromyalgia or POTS to infections, lumps and bumps and even mental health problems. Or heaven forbid breaking a bone or muscle damage, which when you think about how drained and weak we can be could easily be a possibility after a fall.

Which is why I totally rolled my eyes when I saw a post about the junior doctors strike making no difference to those of us with M.E because the NHS can't do anything for us. If only having M.E made us exempt from accidents or other illnesses. Sadly it doesn't. Of course in those situations we cannot always guarantee we will see a doctor or nurse that will also understand M.E or other condition, but in those instances we just have to remember that we know better and we're there for another reason.

This is why it's so important to be self aware and know what is normal for you. And that includes self examination of your bits and bobs too. I have a blog post explaining how to do this for women here and for men here. I think as long term sufferers we're pretty good at being self aware, because we are constantly self evaluating and assessing. Judging how many spoons we might have. Do we have enough to have a shower? Knowing when we need to stop and rest. The effects of PEM on your body and how it will differ from activity to activity. The difference between PEM and a relapse. The difference between a flare in M.E symptoms or a flare in fibromyalgia symptoms. You become an expert in you.

However of course there are going to be times when things feel brand new and out of the ordinary. Symptoms you may never have experienced. Symptoms that scare you, such as paralysis or feeling completely trapped in your body unable to communicate. And when you are treading that line between is this just another M.E etc symptom or something else, isn't it best to be on the safe side? Wouldn't you rather know for sure that it's nothing else on top of everything else?

Not long ago after I had been in a neurological hospital for a week I began to experience a dragging sensation in my face and my speech began to slur with it. It was something I've never experienced before and with this being a key symptom of a stroke you can bet I was spooked. And so even though I was struggling with PEM, I knew I had to get it checked out. Luckily it wasn't a stroke and thank goodness for that. It turns out it was a new PEM symptom, a reaction (or overreaction) of my diva body to having been in hospital for a week and only getting 10 hours sleep in that time, when usually that's what it needs a day. Did I feel better for knowing I wasn't having a stroke? Yes, of course. Did my doctor feel I'd wasted their time? No, they were concerned too and checked me over and spent ages on the phone to my team at the neurology hospital.

Sometimes, even though we're self aware we can also not pick up on some things because we're also so used to being in pain or other symptoms. These might mask other things that might be going on. I know someone that didn't pick up on a kidney infection until they almost got sepsis, which sadly could have been fatal, because back pain and fevers were common when they were flaring.

So my point with this blog post is, be vigilant with your health. Know what's normal for you and what isn't. And if you think something is amiss find out for sure. I know it's hard when you already feel so awful but you need to be safe. Find a good doctor and never think that you have to put up with bad treatment or poor opinion. Move on from them and block out their unhelpful comments. You know yourself and you know you are far from a lazy malingerer or hypochondriac. Because you really do need someone in your corner. I disagree that we do not need them because we all need medical care, whether it is for our chronic illness or for anything else that might come your way. Remember we can't get help if we don't at least ask. Don't suffer in silence. This is all part of treating yourself with love and respect, of wanting the best for yourself.

If anyone knows of a good resource for finding an understanding GP or medical professional please do share.

Take care everyone

Siân
X

When things go wrong

L-R Where I should be this week (source Pinterest)
Where I am this week 

This week I should have been bathing in some Autumn sun and eating my body weight in pastries and gelato. However things did not go according to plan. Not long before we were due to set off for the airport I fell into the grasp of a big M.E crash. The biggest most scariest one since the very first that left me hospitalised, 5 years ago. And so rather than being laid out on a sun lounger, enjoying some beautiful sunshine I am curled up in my bed warmed by my electric heat pad. 

To say the crash came at a bad time is an under statement. However it is not as if we were ignorant to the fact that this could happen. Life with M.E is filled with cancelled plans and disappointment. You are constantly aware that things won't necessarily go to plan. I'm just lucky it's not happened before a holiday before now. I actually woke up fine and had started to get ready, however I felt very suseptible to stress and the bustle going on of pre holiday have we packed this, where is this? I felt overwhelmed by it and it caused a bit of a shake and clumsiness. I dread to think what I'd be like as part of the McCallister family. Home Alone I guess ;-). Also my noise sensitivity was high. I believe it's called misophonia, when you percieve things to be louder than they are and they cause anxiety. In hindsight these were the warning signs of what was to come. However I believe it could have been worse. Had it happened actually at the airport or on the plane, the constant noise and movement could have caused it to be even worse. I think should I have somehow come round quickly and enough to get to the airport that this could have triggered another greater crash, which probably would have seen me hospitalised. One for having to try cope with all the stimuli and stress airports bring about on top of a nervous system that had already given me a big warning. And two for not respecting that initial crash and allowing my body the rest and recovery it vitally needs after a crash. Or it could have happened before our return journey. I know some people would think yay longer holiday but it's not much of a holiday when you're practically comatose and could end up in a foreign hospital.

However much you want to fight against a crash, doing so is superfluous. As is others trying to fight against it. Although it's incredibley scary all you can do is accept it and try to remain as calm as possible. The more you panic, which is easy to do when you are scared at what is happening, the worse and more prolonged a crash can become. Therefore as much as I knew the timing was very unfortunate and wished beyond belief that it wasn't happening I had to accept that it was. To simply focus on trying to be calm and keeping myself from any more harm. After all I did not have the strength to open my eyes or talk, how was I going to face the stresses of travel? A crash is a sign too much is happening. Although it might seem to you that you've not done much to trigger it at all. But sometimes the stress is having a lot on your mind and sometimes it's your illness having been worse than usual or you've had other issues or illnesses on top of that. Often the actual triggers can be small. A certain smell or loud noise. Causing your body to believe it's under attack and go into hibernation to try protect itself.

A crash is a big deal. However I wanted to say that despite what happened and despite all the emotion surrounding it I still remain positive. My determination to keep trying is not shaken. Of course I will be careful and respect the illness because burying my head in the sand is not good. But if this year has proved anything it's that adventure can be possible and a meaningful life can still be had, which gives me hope. And despite it being disasterous, things will be learned from this experience and my achievements won't be underestimated. I said in my Strictly experience blog (the chronic illness one) that I know many people get disheartened by experiencing PEM after having fun and breaking the norm. They feel hard done by that fun comes at such a high price. However for me I don't mind so much because it means I had fun. PEM is unfortunately a symptom that comes hand in hand with having M.E. It's just what having M.E is. You know what's in store for you and you fully expect it. However PEM from doing very little, from actually resting, that is unfair and painful. This is why I am extremely grateful everytime I get to leave the house or even just to get downstairs. Because nothing is guaranteed. You live with a chronic illness after all. Yes it comes with payback that's really not pleasant but as I have said many times life is for living. If you get the chances grab them. Seek out adventure. Seek out fun. I won't underestimate the value of being able to do things or begrudge the payback it brings, especially after this experience. Having made good memories and achievements is worth far more.

A piece of advice I wanted to pass on was if you ever experience a crash before you are due to travel and need to change your plans then be sure to get medical attention. This way they can confirm that you are in no fit state to travel and can provide information for your travel insurance. Seeking medical help is probably a good idea anyway, due to the seriousness of the symptoms. Getting other things ruled out can be important, we might have M.E but that does not make us immune to other illnesses. I know medical attention will cause additional stress on the body but they'll be able to see what's going on and can provide peace of mind.

Post crash I'm in PEM hell and there's still quite a bit of emotion that needs to be comprehended. But hopefully recovery is well underway. I'm working on a blog post about crashes for carers, how they can understand what is happening and how to help. Hopefully that will be up soon, when brain power allows. For now I have linked below a previous post that explains what an M.E crash is like. 

Hope you're all having a better time.

Sian X

Related post: What an M.E crash is like

Long haul travel tips for Spoonies

Finally, here's my tips on how to cope with long haul travel as a chronically ill or disabled person. Buckle up, ironically this is a long post.

Research

When planning your trip it's important to consider the length of time you want to go for. Be realistic in remembering that the journey will require recovery time, which could be longer than you first imagine and you are unlikely to get to see much of your destination. However of course the whole point of going is to "explore" a new place, so you need to give yourself enough time to do this, whilst also allowing time for rest and recovery. Also think about recovery time if you want to go on any day trips whilst away. 

Also consider whether you can afford to upgrade to better seats with more leg room on the flight. Having more room is certainly an advantage however of course paying for the privledge is not within everyone's means. Ring your airline or visit their website to see where their special assistance seats are, whether they have set seats for each class, or whether they will allow you to choose where you want to sit. This can all depend on your disability or illness too, so discuss this with the special assistance team. All airlines will prevent you from sitting in the exit rows for safety reasons but there may be other extra leg room seats you might be able to reserve, which would be beneficial especially if you're in economy. Choose one that is close to a toilet if needed. 

For more information on the best plane seats visit Seatguru at www.seatguru.com to research good seats for the type of plane you will be travelling on. Perhaps have this open as you speak with the airlines special assistance team.  

When researching destinations be sure to check if you need immunisations to travel to where you wish to go. Consider whether your body will be able to handle such injections.

Check your medication is legal in the country you are going to and seek advice on how to proceed. You don't want to get stopped by customs. You should always carry a prescription with your address on it or medical note anyway, along with your medications in your hand luggage. Also whilst on the flight remember to take your medications as per usual. Keep your watch on the same time as your home country so you can keep an eye out or set alarms on your phone or watch.

 

Visit the airlines website. Make yourself as familar as possible with their special assistance policies. Check the types of meals and snacks that are available onboard, especially if you have allergies or food intolerances. This will help you plan what food to pack in your handluggage or to be bought at the airport. You can check what films and tv shows they will be showing. You can plan what you want to watch or if nothing really takes your fancy then you know to bring plenty of your own entertainment. Whether that be downloading films to a laptop or tablet or bringing a kindle, books and puzzle books. 

Visit the airports website.  I would look up the special assistance policies for each of the airports you will be travelling through, so you can have an idea what to expect. Remember although you book special assistance through your airline they are only responsible for your care on board. Whilst you are at the airport you're in the hands of their special assistance team, so be sure to check both your airline and each airports policies.

 Also whilst you're on the airports website look up what shops and restaurants are available at each airport you will be at. This can help you plan where you will eat or get snacks. Again this is particularly useful if you have food intolerances so you know that you can get food at certain places. This can be really useful if you have a layover as you can plan where to go and how best to utilise your time. Alternatively there is the app gareguru and trip advisor.

If you suffer from food allergies or intolerances and have concerns about managing abroad be sure to take a look at www.celiactravel.com for advice on how to ask for free from foods and printable cards in different languages to explain your intolerances. If you are staying bed and breakfast, half board, full board or all inclusive contact your hotel in advance to enquire what free from foods they provide, or put in a special request for certain items.

 

Consider booking into one of the airport lounges so that you can relax in a quieter less chaotic environment before your flight. This is also a great idea if you have a stopover between flights, so you can have somewhere quiet to go recover and prepare for the next flight. Or if you are travelling alone as you know you can get everything you need in the one space without going far and the airport special assistance team know exactly where you are to collect you. If you are travelling alone and haven't booked into a lounge my friend Hannah recommends trying your luck and asking if they will let you wait in there for some peace and quiet. You never know. If they say no, ask them to take you to a quieter spot and don't be afraid to ask them to get you a drink or something to eat.

Packing and preflight

Getting a lot of good quality sleep before you fly is recommended. Sleep is our bodies way of recovering and also keeping our health in check. If you do sleep on the plane it won't be as deep a sleep with being in a busy surrounding. So get plenty of sleep before a trip as well as trying to sleep on the plane as much as you can.

You will often get a sleep kit from the airline with things like a small pillow, blanket and sleep mask however I recommend taking your own things so that you're extra comfortable. Having your own things that are tried and tested to make you feel safe and cosy especially if you are an anxious flyer is a bonus. Sometimes just the smell of them can evoke calm. A sleep mask can help you block out any light and aid better sleep. Also consider noise cancelling headphones or earplugs to help block out noise. 

I say this is in any of my travel posts but it's so important. Pack the items that you need to feel as comfortable and relaxed as possible in your handluggage. Whatever you use at home to achieve this, bring it. You need all the extras you can when in a new and potentially uncomfortable environment. Anything at all that you use when you want to try feel better.

So pack those favourite fluffy socks or essential oils, as long as they're under 100ml and in a clear bag. If you drink a special tea to help you relax bring some tea bags and just ask for hot water when you're on the plane. Comfort is key! These items will help you during the flight but also throughout your trip. Having items you're familar with and known to help you feel better will help comfort you when you are having a flare.

On that note sadly you can't have a hot water bottle or electric heat pad on a plane. Although you can pack them in your checked luggage, which is what I do. If these are things you rely on and worry you might suffer aches and pains you would usually treat with heat, purchase some heat patches that you apply to the skin. You can buy different types for different areas and they last up to 8 hours.

Comfort is key! Yes I said it again. Choose a travelling outfit that is really comfortable. I'd wear pyjamas but I think that's frowned upon. Although I've seen a few people (older than 3) brave it out. So wear the next best most comfortable thing. Stretchy trousers that don't cut you off at the middle. Remember your stomach and legs swell whilst flying so a forgiving waist band is best. Wear shoes you can easily slip on and off and pack extra socks or slippers to keep your feet warm. A big scarf is often good as it can be doubled up as a blanket or as an extra cushion. Layers are also good as you never know what the temperature on the plane is going to be. Just remember to take them all with you when you land.

Wear flight socks/ compression stockings. This will help reduce any swelling in your legs and help prevent DVT's. They are great if you are not used to sitting for that length of time and if sitting usually causes your legs to ache. Or if you experience blood pooling, poor blood flow in your legs. Put them on before you get on the plane.

Bring snacks- You get food on the plane but this might come at times when you are not really hungry or you just don't like what's on offer, or they don't provide anything suitable for your dietary requirements. Especially bring food with you if you have allergies or observe a certain type of diet. You can pick things up at the airport (again visit the airports website to see what shops are there, so you know you can get snacks there) or if you have room in your handluggage bring things from home. Don't put anything in tin foil though as this will cause trouble going through security. Graze snacks are great as they are in small packets. They now do the slightly bigger ones too. I found some in a WH Smith at the airport last time I went away which was useful. Also look at kids lunch box type snack packs like dried fruit or cereal bars. You could also take some things like porridge or noodles that only need hot water.  Again check security restrictions as to what you can bring through security.

Invest in a water bottle with a filter. Such as the bobble bottle. That way you can make sure you stay hydrated but not have to worry till the next time the drinks trolly comes round. Simply ask the air hostesses to refill and the inbuilt filter will filter away any mankyness of airplane water. Plus you don't have to buy another bottle of water because you've had to chuck one before going through security. Although you will need to make sure it's empty as you go through security. They are also great for using at your destination as that way you can be sure the tap water filtered and less hard, as well as saving money on bottles of water. I would double check though that the tap water where you are going is safe to drink though first.

 Pack a portable phone charger in your handluggage. These are great for if you are using your phone a lot at the airport/ on the plane (on flight mode) as they give you that peace of mind that should you run out of battery you are not stuck without the use of your phone. Or feeling reassured you have enough battery life to use your phone when you land, should you need to contact your transfer or hotel etc. They're also great if you are delayed and stuck at the airport or on a layover (especially if it's a long one). You don't have to worry about finding a power socket in order to charge it. It also doesn't matter then if you are in another country but your plug adaptor is in your checked luggage. 

Stay hydrated. Planes will quickly dehydrate you. Drink as much water as you can before and during a flight to stay hydrated. Avoid alcohol and caffeine as this will dehydrate you even more. I know this can be difficult especially if your nerves affect your bladder but do your best.

Avoid big meals. Before flying and during a flight be aware of what you eat. Eating smaller meals and snacks is best because of the effect of the air pressure on your digestive system. Your body cannot digest food as well when you are at altitude and so a bigger meal will cause even more bloatedness and cause you discomfort. Give your stomach an extra helping hand my choosing more easily digestable foods. This is another way you can help ensure you feel as well as possible after the flight, because let's face it you're going to feel cruddy enough.

At the airport

If you are using your own wheelchair your wheelchair will be stowed in the hold at the gate, usually after you have boarded the plane. If you have any stopovers chances are you won't see your luggage until your destination but it's important to check with your airline what the policy is for medical equipment. I've heard that in some instances your personal wheelchair will be tagged with your final destination and therefore once you land at your layover airport it will be taken with the luggage to your next plane. Meaning they won't reunite you with your personal wheelchair until your final destination and you'll be given one of the airports during the layover. Do seek advise from your airline over what to expect, especially if you have a specialist wheelchair designed especially to fit your personal frame and keep you supported or a power chair.

A lot of airports now have those massage armchairs or some even have masseuses, before you board this may be an option to help get your blood flow going. In particular if you are at a stop over airport and you need to recover from the first flight. Keep the pressure light though. Plan your time- One of the things that I predict I would struggle with flying long haul is what to do for that amount of time. Ok I'm used to hours of doing nothing confined to my room but not spending that amount of time on a plane. Spending an hour on a plane is enough for me in all honesty but the world has some pretty fab places that are more than an hour away.  In my travel interview with Hannah, she said that she likes to make a rough plan of how she is going to use up the time, which also allows her to pace and ensure she gets plenty of rest. Plan to get as much rest or sleep as you can but also use lots of distraction techniques like watching a film or listening to an audio book, especially if you are a nervous flyer.

Coping with jet lag and managing your stay

 Commonly the advice with jet lag is to fight it and to get yourself in line with the time zone as soon as possible. However being a chronically ill person we know that fighting our body is never going to end well. We have to listen to our bodies. Chances are after such a long flight and stresses of airports you are going to feel pretty unwell and will need to go to bed as soon as possible to recover. Let yourself recover properly before trying to adjust to the time zone and increasing your activity. 24hr room service can be quite handy here or having someone that can go out and stock up on food and drink would be useful.

The unknown is always going to be your biggest obstacle and challenge, however if you prepare yourself as much as possible and have lots of coping mechanisms you can feel more comfortable in the knowledge that you're prepared and armed to tackle any challenges.

Lastly my advice is enjoy it! Have fun and experience as much as you can to the best of your abilities. Also be appreciative and thankful that you have this opportunity. Don't forget to give yourself some appreciation too for taking on this challenge and giving yourself new experiences.

I thoroughly recommend you search Pinterest and other blogs for long haul posts to get as much info as possible from experienced long haul travellers.

 

I hope you find this post useful. Please comment with anymore tips if you have any, would love to hear them. I've linked some more posts that are related below. Or for all my posts on my spoonie travel series visit my travel tips page.

 

Sian X

 

Travel interview with Hannah, including long haul tips

Researching a holiday

Planning a holiday

Getting travel insurance

Booking special assistance

 

 

 

 

Travel interview with Hannah (including long haul)



copyright: Hannah Wallace



 

Today's post is a spoonie travel interview with my darling friend Hannah, who was a very lucky lady recently and travelled to Mauritius. How divine?! As this was a long haul trip, (as well as drawing from some of her other long haul trips) I added in some more specific questions relating to how best to cope with travelling long haul as a chronically ill person. A few people have also asked for this and fingers crossed this is something I hope to do in future. The thought of it does fill me with apprehension, so I personally will be taking notes.

 

Illness/ disability:
Ehlers danlos syndrome, POTs, Fibromyalgia, Bursitis in my hips due to EDS, ME and a number of allergies

 

Destination:
Mauritius

 

Who did you travel with?
Partner

 

What airline did you use?
Air Mauritius

 

First of all, how was your holiday?

 

It was amazing, beautiful and relaxing

 

What was your biggest worry before travelling? And how did you overcome it?

 

Obviously getting more ill on holiday is always a concern. For me things like dislocations, pain, stomach issues and fainting are a constant worry but I try to think I have good medical insurance and I'm with someone that will really look after me. Plus all these things could happen at home too. I've been unwell a long number of years but I remind myself that I'm lucky I'm able to do this with these illnesses. I try and look for the positives. I think being organised is the key, having plenty of help and plan, plan, plan. I think it's natural to worry about things but if I choose to embrace this worry I'm in control. Also I'm very aware how stress affects the body so I try and be mindful about that.

 

Did you notice any changes in your health whilst you were away? Good or bad? Any new symptoms?

 

I had body temperature issues and struggled regulating it. This always happens when I travel as POTs can be iffy in the heat but I'm very mindful of this, so I work with it daily. My joints flare up if it's too hot as it can make me more stretchy, due to the defective collagen in EDS sufferers. Over all my health was all about the same as it is at home, besides bite reactions, a whole mouthful of ulcers (which is very normal for me) and a few nasty headaches. I tried to generally plan well so if I did more activity I made sure recovery was planned after. I realise it sounds not great but it was ok as it was not much more than what I experience at home.

 

How was Mauritius as a destination in relation to your illness/ disability? ( Accessability, flat, close to restaurants etc, quiet)

 

The resort was great. We stayed at the Westin Turtle Bay hotel and I was very impressed overall by the Westin group, especially concerning dietary requirements they were really good. The food and restaurants were over all really good.  It was very accessible as the hotel had been rebuilt due to a recent fire. I would recommend the place. The hotel was quiet too and plenty of space. One day they told us there was going to be some building work near our room and so they moved us to a quieter area.

 

How did you find attitudes/ perceptions towards you by other travellers and from the locals?

 

Other travellers were really nice. Obviously people wonder what's wrong, especially as sometimes they see you walking small amounts etc and others you are in a wheelchair. I think at the end of the day it's natural curiosity. I guess it's how conscious you feel about that. For me personally I'm not too worried. I'm just so appreciative I'm having these experiences that I think screw it. Obviously it's not always been easy to have this attitude, I've lived with this 15 years and learned you have to choose to adjust or it'll torment you. There's always going to be a few twats in life and I have adopted a no twat policy in my life. And to be honest if someone was rude I'd say something back. You do get nosey people but it's the same at home. The locals there were very nice and kind.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill/ disabled person it is still worth it?

 

I think it's a personal thing to decide. Obviously a big factor is how unwell you are how well your illness is managed. Like any risk assessment you have to weigh it up. For me it's worth it. But it's been trial and error over the years. It's about being realistic with it all and prepared. Life is full of cause and effect, it's finding the balance within this. Most important is choosing to go with people you trust and knowing you'll be well supported and looked after. If you don't have this it wouldn't be a good idea.

 

From your experience(s) what pieces of advice would you pass on to other spoonie/ disabled travellers/ would be travellers?

 

Good planing all the way is the key. As well as maintaining your routine while away is a good idea. It sounds very controlled but then this allows for flexibility with things. Be organised take the important things from home that keep you comfortable. Be researched on where you're staying even down to the small details, especially with diet stuff. Try and keep any dietary requirements as you do at home. Tummies abroad are definitely more prone to things so by not upsetting this to much you help yourself. Compression socks are essential for flying even if it's only an hour. Make sure they are put on at least an hour or two before the flight and leave them on for an hour after landing. Keep hydrated. Don't wait till your gasping for a drink and have it in a routine as our bodies respond to rhythms. Re-hydration pills are a very good thing to use regulary on holiday especially because in the heat our bodies can react and are extra sensitive to heat. If you can't tolerate booze don't do it I know it's boring but it's not worth it. If you can do it cause I bloody would :))). Keep up your salt levels too, to help muscle cramping and restore anything lost through needing extra hydration or sweating. This all sounds boring but have fun in the ways you can because these moments are so precious. Best advice ever is don't worry what others think end of full stop. ( not the easiest one ) but it will empower you and free you once you embrace this.

 

What items would you not travel without?

 

Aside from medication I wouldn't travel without my supplements I've found things which help and I keep this up while away. Salt is a must for me as I have low blood volume, so I need to put it on my food and take it off my hand regularly to help stop me fainting. I use Redmonds Real Salt, the sea salt. Re-hydration pills. Noise reducing headphones. A super soft neck pillow. My own blanket for the plane. And super warm socks. My silk pillow case and silk dressing gown because these make me feel good. My yantra mat. My iPod and kindle. Pen and notebook. Ghds. Lipstick. A good face cream. A Mala, which I wear. A few crystals, cause I'm crazy. And Miffy of course ;)

 

What are your favourite holiday beauty products?

 

My fave beauty products are not the most luxury but are necessary. I suffer with prickly heat so the Rona Ross prickly heat wash and lotion and skin repair lotion work great, they aren't super expensive and I never travel without them. Other essentials are: Aloe Vera gel. Hydrocortisone (you never know). D pantenol which is great for bites and burns. Marula oil, I love this stuff and use a few drops under my moisturiser. A good cleanser is essential for getting the day off, I tend to take Liz Earle on holiday as I find it the best staple it removes every thing properly. I use Liz Earle face mask that's hydrating too great for after being in the sun or I love aromatherapy associates rose one they work !! Lip balm. Carmex. Good hair protection, this time I used Aveda spray.

 

If you were to go on holiday again what would you do differently?

I don't think I'd do anything differently as I'm fairly well practised. I think I just need to keep being mindful of my limits and be cool with it.

 

How are you after your holiday?

 

Well I didn't expect to feel great after the flight but that was as expected. I did get a minor ear infection which has been a pain but I've made sure I've really rested up after.

 

Did you have to make any special arrangements for transfer from the airport to your hotel because you were in a wheelchair? Or did you/ have you ever encountered any problems about this?

 

I always get a private transfer from the airport but I know people who don't and they have found it ok and people mostly helpful.



Copyright: Hannah Wallace

 

What do you pack in your hand luggage to help you survive a long haul flight?

 

Salt (as explained above). I get coconut water at the airport from Pret or Boots one to have at beginning of the flight and one for just before landing as it's isotonic so it's great for re-hydrating. And I buy loads of water after security so I have enough for the journey. Dark chocolate. Some form of gluten free energy bar and some crackers of sorts. A warm blanket I fold it up and sit on till I need it. Thin gloves. Neck pillow. Warm socks. Lip balm Hydration face spray. Moisturiser. Small hair brush Kindle. iPod. Noise reducing headphones. Mala beads of course ever the yogi. My own Silk eye mask. A bottle of aromatherapy associate breathe oil to sniff and some lavender oil. This time I took small post cards to colour in. I layer clothes so usually take an extra cardi or jumper and pashmina. My own water bottle. Wipes for hands or face. Tissues. Sunglasses for reducing light and headaches. Walking stick. And finally spare pants!

 

What is one thing you should know about flying long haul that is a great tip but a lot of people might not think about before hand?

 

Wear flight socks to help your legs. Also find out if the plane is full. If it's not you may be able to get a few seats to lie across which really helps when flying economy. Don't drink totally cold water, drink it at room temperature or warm it shocks the stomach less If you drink herbal tea take a few bags they'll happily give you hot water.

 

How do you cope for such a long time on a plane?

 

If you haven't flown long haul before becoming ill it's probably not the best time to try it unless you need to for some reason or feel you can cope with this. I cope by making a schedule of sorts. You know food is served fairly soon when you take off and another meal towards the end. Also lights will be dimmed during night hours at some after the meal service for sleep. So I try to make a plan such as meal service, movie, drink, nap, drink, meditation, drink, nap, listen to music, sleep relaxation app. Sometimes I watch two movies but I try to sleep. I find with pain etc it's often harder to sleep and it's frustrating when I see others snoozing away. So if you're lucky sleep as much as you can. But if I'm struggling I try and do it in blocks of 40 mins or an hour and half as these are sleep cycles and you tend to not interrupt sleep cycles. It's never going to be a bed of roses but I highly recommend trying to plan it. Also be aware in sleep times they tend to heat the plane up more so you may suddenly feel warmer, that's why layering your clothes is great. Keep hydrated, it's essential even if you need the bathroom more often. If people around you are asleep you can call a steward to help and take you. And you will always be seated near a toilet and if you're not ask. Making sure you relax properly will also help, which is why all these new relaxation apps they have are great. Noise reducing headphones are definitely a help too. Making a plan really does help because it helps break up the journey too. Move your ankles and feet too, this helps blood flow. If you're ill and travelling alcohol is not a good idea. Wear comfortable clothes you can still look good and comfy but it really makes all the difference. I used to worry saying exactly what I needed from the airline etc but I've learnt being clear with them is good. Chat to the special assistance team of your airline before you fly to arrange what you need and discuss what is available.

 

How do you cope with layovers for connecting flights?

 

Find a quiet spot to relax and get some rest. Having access to an aiport lounge can be a big help. If you don't have access to a lounge then head phones that reduce noise and an eye mask can help you get some quiet. Find a floor or row of chairs where you can stretch out. This can be helpful, not the best but if needs must. Assuming you have people with you to help watch you and your bags. If you're travelling alone it could be worth putting it out there and asking if they could put you in a lounge as special assistance at the airport will help you from the plane and later on, onto the next plane. Again keep hydrated.

 

 

How do you help manage jet lag?

 

I think depending how well the flight goes for you it definitely affects jet lag. But I use extra melatonin to help me. Magnesium oil is great if I can't get a bath. Rest more after your flight and go with the flow, listening to your body. Also when I arrive somewhere I lie on the floor with my legs against a wall well supported and padded this helps blood flow. I do this daily anyway but it's a helpful inversion. Make sure you get up slowly! If I arrive somewhere and they have a bath I will have one before bed. Once I'm back home I will always have a magnesium bath with flakes. Trying to keep to your normal times definitely helps too, although not always easy.

 

What do you find are the biggest challenges flying long haul as a chronically ill person?

 

I think the biggest challenge is coping with pain if it flares up, that's never easy. Being sat for that long with your legs low is a bummer too. That's why even if I'm shattered or painy I like toilet breaks as I know it's moving blood flow. It's the unknown that can be our biggest worry but like my mum always this is the risk you take. I think the time factor is never easy as it's a long time, we tend to do much shorter things so it's demanding, which is why you need to take extra care.

 

In your opinion is it worth paying extra for an upgrade to better seats?

 

It's definitely worth paying for the upgrade if you are able to. Having your legs elevated and more space is a very good thing, you do notice it makes a difference. And if you're not able to my tip is checking if the plane is full or not and asking if you could move to an empty row, so you could stretch along a few seats. I think making sure you meet your personal needs is most important.

 

A big thank you to Hannah for taking the time to do this interview and sharing with us a bit more about how she coped on holiday. It's much appreciated Han! Also a big thank you on the insights into how to cope on a long haul flight. I'm hoping they might come in handy in the future. Hopefully soon I'll have a tips post on more things to consider if you're planning a long haul trip. If you have any specific concerns about travelling long haul that you would like to see mentioned then please leave a comment below and I will do my best to answer them in the tips blogspost. Thanks again Han!

 

Sian

Let me put this in a way you might understand

Let me put this in a way that you might understand a little better, what it's like to have M.E. I know at times it can be confusing or not what you'd expect. However, this is most probably because of a pre conceived perception of what you may think living with a chronic illness is and the sometimes conflicting things you might see on social media. No one's social media account represents them completely or documents everything, and the same is true of course of those with a chronic illness. On social media I tend to only post about the happier things that happen. My profiles and feeds (as well as those of many others with a chronic illness) may look like a highlight reel. The things that I've been lucky enough to be able to manage to do. Except of course during April and May when I go into campaign mode to raise awareness. I can well understand that onlookers will see some of the posts and think "well things are probably not that bad then." "She managed to go on holiday." Sadly they may even think I'm overreacting or worse that I'm faking. It can be a little like when someone pulls a sickie from work then post on social media that they've been on a massive bender. Before I post things I often wonder " what will people say/think if I post this? Should I even post it at all?" I know many people in the same boat that are so careful with what they post because they fear the backlash of nasty comments. How it may look as though we pick and choose the days we are ill or better. Or that old chestnut "funny how you can't work but you can go out."  It's true, we do have days that are better than others and days that are wore than others, but there's very little say in how we influence them. I'd like to think that those that knew me before I became ill, which is probably the biggest percentage of my Facebook friends, would know that these statements do not match my personality. However I understand most will be confused. I am confused a lot of the time too!

Anyway, in order for me to do the things I post about, such as going out for dinner, shopping, to the very big deal of going on holiday a lot goes in to trying to make that happen. Like I said there's not much influence we can have on the outcome but there are things we can try. In this modern age most of us won't leave the house without first charging our phone battery to make sure it works when we need it throughout the day. For someone with M.E to attempt being social or to attempt something around the house the same kind of thing needs to apply. We need to 'charge' ourselves up. Sadly, we can't just plug ourselves in. Put basically, for someone with M.E charging up means doing nothing, resting, and by nothing I mean nothing; limiting our activity even more to try and reserve energy and store it up to be used to get us through the event. In chronic illness circles we call this saving spoons. For more info on why we use the spoons analogy read my blogpost on the spoon theory.

 So if we know we have something coming up, a doctor's appointment (see not always fun stuff) or people coming round, the days before or sometimes even a week or more (depending on severity and the type of event) we need to try our best to conserve our energy to at least have a chance.

source: Pinterest

However we are never going to have 100% charge, in comparison to our old selves or a healthy person. Using the functional ability scale by The Association for Young People with ME currently I am actually around 30%. And that is at best! Those times you might see me out of the house, I am functioning at a maximum 30% (it's probably less especially by the time I've got ready and left the house) of a healthy 'normal' person. You can learn more about the functional ability scale here, http://www.ayme.org.uk/functional-ability-scale

This is because people with M.E aren't able to produce energy properly. The mitochondria in our cells, which is the bit that creates energy, is faulty and therefore cannot produce energy as it should. So imagine going to charge your phone and the maximum you can get is 30% of your battery life and that amount of charge has to last you a few days, a week or sometimes more. You'd be demanding a refund or a new one right? If only the same could be done with unhealthy bodies! Therefore even by resting before hand it doesn't mean we're fully fit and healthy when we leave the house and that we have a full battery to use.

 Also because we only have that limited power everything takes so much more effort. Talking for longer than usual may make you out of breath. Getting up the stairs might require a few stops along the way. Adversely the more effort we're using the more charge we're eating up. This is why mobility aids and other equipment are in some respects our saviours as they allow us to do things by minimising the effort it would require without them and use up less of that precious energy. This is also why you may be confused if sometimes you see us standing or walking and others we're in a wheelchair. We might be able to walk a little but not very far and it will exhaust us a lot quicker. Therefore wheelchairs and mobility aids allow us to hopefully do a little bit more. It's also important to know that that 30% charge has to last us throughout the event and even longer. Obviously the event is going to take up the majority of that energy and leave you with just the dregs, which is all you will have to run off for the days/ week/ weeks following.

Unfortunately because of the fault in our mitochondria we can't just eat something or have a quick nap, or a good nights sleep to restore us like a healthy person would. They may work fractionally but nowhere near as effective as they should be, due to the mitochondria not absorbing nutrition as effectively and turning it into energy. As well as because our sleep is rarely refreshing. You only start to slowly regain some quality of living as your body has the amount of quality rest, recovery and sleep it needs to recharge sufficiently.

Source: Pinterest

This is the part you won't often see because we're cooped up, house bound, bed bound, looking slobby in our pj's. Not only do our bodies not produce energy properly but M.E is characterised in particular by a symptom called post exertion malaise (PEM), which is pretty much as it says, although malaise might be too mild a word sometimes. Therefore as soon as you exert yourself (and exert refers to simply moving, talking or thinking,) you are then going to feel more ill as a result. Bummer huh?! So the bigger the exertion, such as a trip to the shops, the more drained of energy you will be and as a consequence of such a large amount of exertion you can feel extremely ill. Although because any activity is exertion sometimes the post exertion malaise can be just as bad after smaller activities. For example to get down the stairs might use up less energy and be a task we can manage on a day when we know our energy level isn't at it's best. However say our energy level is at 10% by going downstairs that energy quickly gets eaten up, leaving you at the very dregs again and feeling potentially just as bad as a bigger event. Just last night I asked for help to come down the stairs as I was getting sick of the sight of my bedroom, only to need putting back to bed 20 minutes later because I was so exhausted and feeling like jelly after the exertion of coming down the stairs. Nice kick in the teeth there !

Many people call this payback. I sometimes refer to it as a side effect from life. I don't get many side effects from tablets but I sure do after doing things. PEM feels like being ran over by a bus or walking straight into a brick wall. It hurts! And this can last for weeks. I guess the closest thing I can compare this experience with that is more relatable is that of having a hangover, but one without the alcohol and lasts for weeks. It feels like punishment. A from Pretty Little Liars has nothing on PEM (Who the hell are you?). Symptoms vary but can include extreme fatigue, exhaustion, muscle aches, muscle twitches, tachycardia, palpitations, breathing difficulties, cognitive problems, sore throat, unable to talk. See my post on what an M.E crash is like for a bit more insight on what we might experience, which you can read here .

However this 'charging up' to be able to do things doesn't always go to plan. Quite often life will get in the way, throw you some "drama" that you need to deal with that will use up that saved up energy and use it up quickly because you are stressing about it. Ironically one instance of mine where this happened was a faulty phone charger. Life can constantly throw things your way that you have to deal with in the moment as best you can, with what you can. A sick relative, an unexpected bill, something breaking, a cold or stomach bug. We're not immune to life's dramas. But all that stress and using up a lot of physical, emotional and cognitive energy is going to lead to some quite nasty post exertion malaise. But what can you do? You can't stop them. Then there are times you can be as 'behaved' as possible before an event and have no dramas beforehand but when the day comes you still don't have the energy and feel too ill to do it. Like I said, we don't get much of a say, no matter how much we try. We're chronically ill after all. Sometimes the energy you use up just to get dressed and ready can leave you too exhausted to actually go anywhere, except back to bed. It's happened so many times. You feel like Cinderella all dressed up with no where to go. That stings to be honest. To know you have given yourself the best possible chance and still it's not enough. But simply being ill uses up a lot of our energy, because our bodies are in a constant state of high alert. Pain is exhausting. Our nerves can be extremely sensitive. Being ill is exhausting and relentless; you're constantly reminded in some way or other that you're sick. So even though you may think "this is so unfair, I've done nothing" it's your illness that has been draining you of that energy.

So to sum up, if you ever see someone you know (or don't know) that has a chronic illness post about going out etc, know that this is certainly a rare occurrence. That they have probably posted about it as they are so made up to have been able to do something relatively normal. To escape the confines of their room or house. But know that this hasn't been easy to do and that there will be consequences as a result. Feeling extremely unwell, barely able to move, just because you did something as seemingly simple as a doctors visit or a meal out. There are times when we think is this little bit of normality even worth it for all the suffering that will follow? However these moments are important for our well being. To break the cabin fever. Because being predominantly bed bound and house bound is hard emotionally, and can be lonely.  I understand it can be confusing but just remember these moments are the exception not the rule. Little moments of trying to grin and bear it amongst the harsh realities.

I hope this has clarified things some what and put them in a way that is a bit simpler to understand. If you still have questions though please do ask. I'd rather answer questions from someone trying to understand than someone passing judgement without trying to understand.

Thanks for reading

Sian X

All the emotions: Facing reality on holiday

 In my post about my trip to Brussels, read here, I said that it had re-awakened that wanderlust part of me and that I was excited to try new places. This also coincided with us not being able to go to our usual holiday destination this year. And so, we decided to try a new place this year. I did my fair share of research and found a flight and hotel that seemed ideal. And so our Zante adventure began.




Copyright: Sian Wootton

 

Last week my instagram portrayed travel and adventure, pretty dresses and bikini weather. A picture can paint a thousand words but sometimes not show the reality. Many people who have social media accounts as well as a chronic illness will relate with the statement that their posts are a highlight reel, predominantly sharing the good moments, just a tiny glimpse into our day, not the 99.9% unphotographable reality; and this is certainly the way in which I feel about how I documented by holiday. In all honesty I found it hard at times to face up to the realities that being on holiday as a chronically ill person in a wheelchair presented. Especially being in a wholly new place, where we knew no one. Sadly as much as I want it to M.E doesn't get stopped at border control, it is always going to be your travel companion. Of course I knew this, I wasn't expecting miracles. However when you go somewhere new when you're chronically ill or have a disability it's as though you are seeing it through blinkers, you can only see and do so much and there is so much you will miss. Sometimes it's as though you could be anywhere, just with much better weather.

 

I was actually quite suprised by how down I felt at times, even full on ugly crying. No this is not a recurrence of my depression! I just needed to let out my feelings and then eat them with ice cream. Being chronically ill is tough physically and emotionally and you can't always be positive about it even though you try your very best to be and others may be amazed at how you cope. But sometimes you don't want to hear "you cope with this so well" "you're so brave" "you're an inspiration". Because all I want is to be normal. Even if I can't have the life I had before. I want what is normal or mundane for most people. I want a steady job and make my own money. 9-5. Works drinks on a friday. Weekends of socialising, fun and exploring. I want to be able to make my own dinners. Do my own laundry. To be able to be able to pop to the shops when I fancy some cake or chocolate. I want relationships where I'm not going to feel like I'm a burden. Or they need to be my carer. That I feel I have much more to offer.

I just long to feel my age. To not be a burden. To be less lonely. I hate being so stuck. So helpless. So unable to even look after myself. Of not having control of my wheelchair and being pushed all over the place. Constantly worried about getting bruised toes. One seconds lack of concentration and you're into a wall. Used as a trolley. The bag minder. Made to feel you're a nuisance or in the way. Or that others are a nuisance being in the way. That you deserve so much more attention because you're in a chair. To see people pull others out the way. You never quite get to what you want to look at. You're in the way at the breakfast buffet or the salad bar. Not that you can see what's on offer in your chair. You can't go anywhere on your own. Or when you want. Not even to the loo when you're out. You can't just stand up and take yourself off. When you need to get there quick is the worst. Or rarely be able to use the stairs on your own.




I'm just so tired of so many no's. I am not a no person and I try my best not to be with this illness. I try to do what I can but still there are so many limitations. No this place is not wheelchair accessible. No you can't get along that path as someone has put signs up on the pavement. No you can't eat most of what's on the menu. No you can't go out today as you went out yesterday or the day before. No you can't just pop downstairs and get what you want. No you can't be left on your own for more than a couple of hours. No no no.

Sometimes I think I must look and sound like such a diva. Push me here. Be careful there's a wall right there. Turn that music down. I need this. I want that. This is not good enough for my needs. Especially when I need to raise my voice as both my parents are hard of hearing. I must look like a right stroppy madam. Within an hour of me being at the hotel they had already gone to buy me a chair so that I would be able to shower. Ok this is necessary and I was expecting this to be there with an accessible room and fair play to them for helping me out. But all these extra needs are frustrating. So many things literally, and I mean literally in the correct form, get on your nerves and make you feel shockingly poorly.



source: Instagram

 

This is not something you get used to and I don't want to get used to it. And I don't think my family are used to it either. The days when you need help just to sit up, to pull your pants up or to be fed. Even the good days where you can get out in your chair. You're not independant any longer. Others get a say. And you need them just to get through the day. You're no longer your age. Some days I don't feel like a person. I'm an illness, a disability. Sometimes people won't address me when they're speaking. A conversation will literally go over my head. Or when people talk about me it's not long before my illness will come up. Probably even within a few sentences. I'm the one in the wheelchair. Like that is my identity.  And some days I feel that even I believe that's all I am now. That I'm boring, and don't have anything interesting to talk about. Non of my former achievements seem to matter now or they are subsequent. The things I spent years and a lot of effort achieving. All gone to dust, it often seems. I hate that due to this illness I'm percieved in a way that couldn't be further from all that I have worked for and all that I am proud to be. And as time progresses and I continue to have this illness the harder it becomes to differentiate between your true self, all you want to be and how this illness forces you to be. 

But back to last week. Can I say I had a good time? I want to. I did things. Achieved a lot. More than I do in a week back here. I'm able to "say great job, you did so well." There is plenty that I will be putting in my memory jar and scrapbook. However each one was riddled with so many questions and confrontations. How arw we going to get down the kerb? How are we going to get up the kerb? Who's going to hold onto Sian while the other gets the chair up/down the kerb/step? Is there a ramp? Can you even get up the ramp? Is the ramp blocked? Where can we put the wheelchair out of the way? Look another step. Oh crap we've taken out the sweet stand. Overall I've done these things and still inside just felt blocked off but at the same time unable to shut off from constantly being reminded you're disabled. Chronically ill. Some of the things, especially the last night of the holiday I feel I did just to try escape my own head. You get like that every now and again. You hope a change of setting will let you stop thinking as much, stop crying in all honesty. I can't blame it on the place or the people. It's just been a tough week. I'm sure it might not have mattered where I was I may still have felt the same. Just utterly fed up at how cruel life has been. Lonely. Heart broken for the life that once was and person that at times seems to have been left behind. How this trip could have been if I had the health?

I don't want to sound ungrateful in anyway. I'm happy that I had the idea to go there. That I wanted to try other places. That I have great parents who care for me in every way, and without whom these opportunities just wouldn't happen. After having a really good cry and letting out my feelings by writing them down I did feel better. So I don't wish to place the blame on the place or the people at all. Nor do I wish to put anyone off going away. Because if it's something you want and feel you can do, go for it. I just wanted to talk honestly about my experience this time around. To say it wasn't all picture perfect. How can it be when you are chronically ill?

As with anything in life now I measure it through the amount of smiles I have and the consequent laughter. And while this has been a lovely trip and I have managed a fair bit, of which I am very grateful, I've not smiled as much. It's hard to admit that because you just feel guilty. Like how dare you not have a good time! But when what you can't do and all these obstacles are constantly in your face it's hard to put on a genuine smile. To keep positive. A holiday is supposed to be about having a break, and unfortunately we don't really get much of one. However there are positive things that I have taken away from this trip like my wish to travel more has been accomplished and I have done some nice things that will be documented in my scrapbook and memory jar. Even picking myself up after full on crying and being so morose, I will take that as an achievement. I did have to buy a hand bag just to be sure I excercised all my pick me up methods though.

Apologies for moaning. You know I'm generally quite positive but it can be difficult to smile all the time when everything is in your face. Thanks for listening.

Sian X