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

Taking Chances

Source

Over the next two months things are about to get hectic. Admittedly things already feel hectic and that's from just trying to haul my ass through the pain of each day and make it out alive. On top of that I've been trying to change up my room. Hey I need a change of scene. I bought new furniture way back in January and only in recent weeks has it made it's way to my room. Trying to go through everything and throw away all those bills from 2010, and socks that are sadly not going to be reunited with their sole mate (see what I did there) has been arduous. It's frustrating wanting to get things organized, especially when you are surrounded by piles of stuff that has no place until you can put the new furniture in. And all that clutter is somehow oppresive and has it's own kind of noise that creates so much discord. I just want to get it done! However of course it's not that easy. I need to pace it. Doing too much on one day leaves me unable to do much apart from stare at all the stuff yet to be sorted for the next few days.

However this needs to be put on hold a little longer as things outside of the bedroom are about to get busy. Although ironically during most of that time I will actually be confined to my room a great deal more to be able to reserve as much energy as possible to cope with these events. In the next 6 weeks I have 2 big events going to watch Strictly Come Dancing and a holiday to Portugal. And after that it's my birthday. I feel a little overwhelmed but at the same time incredibley grateful. I know it's not going to be easy. I know things could go glitterballs up. I know it's going to take every little scrap of energy and I know it's going to give me horrendous post exertion malaise, making me very unwell. You should have seen me the day after getting the news I had Strictly tickets, fighting for breath and feeling like I had been ran over by the Strictly Express. I also know that maybe it's not the best thing to do in order to preserve my health and to try and avoid further setbacks. But I have said it before and I'll say it again life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance.

 More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been. And that's saying something. I've been of the opinion that it's our own responsibility to create our own happiness and give ourselves chances for a long time. Possibly because I've spent more than half my life now with one chronic illness or another. Or perhaps as I have previously suffered from depression, anxiety and self harm and told myself countless hideous untruths about how worthless I was and that there was no point being alive. Maybe that has given me a greater perspective as well as a healthy respect for my mental health.

People say wow you're lucky and I'm not sure how much I'd agree with that. Yes I have a horse shoe in my room and a four leaf clover in my purse but I don't feel lucky. I'd rather my luck granted me good health and more independance, the ability to work and be more social. These opportunities have only come about though because I applied or booked. I put myself in the frame to have these chances. And chances is the right word, because they are big chances. I'm taking a gamble and hoping that on the day I can get out of bed. There's a high possibilty I won't be able to. That they'll go the way of many other failed attempts and literally all end in tears. Many will say I'm setting myself up to fail. I see it as setting myself up to try. And being a tryer is one quality I will always admire in myself.

Like I said I know there is a high chance things could not work out. I have a full understanding of the reality of the situation. There are many precautions and stratergies that go into any opportunity. Planning to the nth degree to make things possible. And like I said I am fully aware of the reality that things might not work out, despite everything being carefully planned out. As well as the effect such mamouth efforts will have on my health. You can read more about how I manage to leave the house from time to time and the effects it will have in my blopost let me put this in a way you might understand, which I have linked below.

Living with a chronic illness and knowing there's no cure or effective treatment I think you become even more aware of how unpredictable life can be. You feel that most of your adventures are probably behind you. That your life will never resemble that of the average human being again, or what we perceive to be average/ normal. It's a mental health disaster zone in many ways. But the human spirit can be a powerful thing. Somehow you find the strength to get through each pain filled day, somehow you adapt and find ways to cope. Yes, you cry and you curse and ask why this happened to you but somehow you find grit and determination to tackle each obstacle that is thrown at you. It's amazing. I have the upmost respect and admire everyone that gets through each day with a smile on their face and hope in their hearts. Hope is so important. And I think that by giving myself these opportunities it is a way of retaining that hope for me. I have to find some kind of life in this half life existence. I can't have the every day freedom and pop to the shops when I want. Nor work in my dream job as I trained to do. To leave the house at all it's in a wheelchair and with a family member. I'm the woman still going on holiday with her parents, which I didn't expect to be doing at this age, nor does society expect it. However it's the way things need to be to at least make travel somehow possible. To quite literally broaden my horizons. I can try and go after the extraordinary every now and again. As the saying goes "Shoot for the moon, even if you miss, you'll end up amongst the stars."

Sian X

Related  posts:

Let me put this in a way you might understand explaining how mitochondria work and how being able to leave the house on occasion doesn't mean we're better.

Holiday Get ready with me how I prepare myself to go on holiday, step by step from 6 weeks before to leaving for the airport.

Forget the boom and bust? Another post on taking chances and making the most of opportunities if we are able.

The Memory Jar A way of documenting all the special little moments and trying to seek out the good, despite the often bleak existence of chronic illness.

  

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

 

 

 

 

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

Spoonie in the city

The last few years I've shared with you some of my travel experiences and even compiled a whole series of blogposts full of tips and advice on how to cope with going on holiday as a chronically ill person. To read a round up as well as links to each detailed post from the series click here. With advice from researching and planning your holiday so that it tailors to your needs to surviving the airport and plane journey. However the only holidays (besides a weekend a few hours by car) I have been on since being poorly have all been beach type holidays (although I never actually went to the beach once) and have all been to the same place. Sometimes to the point of the exact same room. Familiarity and knowing you'll be comfortable there is something that I have stressed in my research and planning posts because it really is important. And for that reason as well as finding a place that feels like a second home were we are treated like family we haven't strayed from it. Of course this too was new at one point, but back then I was right at the beginning of my diagnosis and able to do a lot more. My parents had a holiday booked and I really didn't think I could cope on my own at home whilst they were away and so I ended up going too. Turns out it was a good call. Also I understand that for you, if you have not been on holiday as a chronically ill person before then familiarity is not something you'll get straight away. However my tips teach you that by doing your research and getting to know as many details as you possibly can, when you get there you already feel you know the place to some extent. Perhaps even before you book. Only book when you are 100% in your choice of hotel, resort and flights and you get a sense of that is a place where you can relax and have a good time. 

Due to me only going on the same sort of holiday and to the same place the majority of my tips so far have mainly been orientated around beach/ Summer holidays, based on my experiences. Although many of them can still be applied to your holiday of choice. At the beginning of the year an opportunity arose to break those boundaries and step away from the familiar. Some members of my family moved temporarily from the UK to Brussels in Belgium and as I knew I would miss them like crazy (they have twins that were 4 months at the time) I started to think about going to visit them.

I love city breaks. When I was healthy I used to love going somewhere that had so much to do and see. I was not really a fan of beach holidays and sunbathing for hours on end, feeling quite bored and like I wanted to be doing something. However of course that really does not comply with the chronic illness lifestyle and so I learnt to love beach holidays. I'll be honest it wasn't hard. When you're already used to lying around all day, able to do very little, getting to do that in glorious sunshine, where they understand the need for a siesta, is an upgrade. In fact the heat and mediterranean air made me feel much better, correcting my sleep pattern and reducing my pain levels, so that was a nice bonus. You can read about my holiday experiences here, here and here.

Therefore going back to try cope with a city break was one that felt rather outside my comfort zone. Or my 'I'm a sick person I'm not sure I can cope with that' zone. Such a party pooper. Of course despite being chronically ill I'm still me, and with that there is still that love of cities. Therefore you can see my conundrum. I understand that this city break was a little different with me going to visit family and yes that did make the decision to go much easier, indeed without them moving there I doubt the opportunity would have arose. However it still came with a host of new challenges. One of which being that we didn't actually stay with them in their apartment. As you can imagine a spoonie living in a small space with 2 4 month olds may prove difficult. Also I needed to make sure I had the equipment that I needed to be able to wash etc.

 Them living there certainly did make me think about how I could at least try and test the waters. Here, was a chance for me to experience something new and exciting. I had told myself at the start of the year that I wanted to experience as much as I could if I could do so and here was a great opportunity to do just that. I want to be as happy as I can possibly be. At the end of the year I want to look back through my memory jar and scrapbook and be reminded of all the great memories that I have despite the majority of my time being spent in pain and bedbound. They're already looking quite impressive, which is such a joy. However in order to make this experience possible and less imposing I needed to tailor it as much to my needs as possible and be armed with all my coping techniques. This included things like:

Finding the right hotel that catered for disabled guests, was close to were my family lived and was in a relatively quiet area. Also a hotel that did room service just in case I was too ill to leave the room. This is were Google maps and Trip Advisor were really helpful

Practical flight times

Booking special assistance

Being picked up when we got there and taken to our hotel

In grasping this opportunity not only have I made some priceless memories but along the way I have picked up some tips and advise for coping with a city break as a chronically ill person, which I can share with you. In my next post I am going to share a bit more about the trip and how I coped. Then I will do a separate post of tips and I also have a funny post that I've been trying to get done for a while now in relation to the trip. 

Hopefully be back soon. If you can think of any tips you would like to know regarding travelling with a chronic illness please leave a comment.

Siân

x

Forget the boom and bust?

 If you are diagnosed with M.E and are referred to a clinic in your area, one thing they will teach you is all about trying to avoid boom and bust and learning to completely redefine the word pace... you've  rolled onto one side now DON'T ROLL OVER AGAIN FOR AT LEAST ANOTHER HOUR!! This is the only real "sound advice" you are given. And that's if there is a clinic in your area. In many areas there isn't and you simply have to rely on the information that your gp does or does not have.

 

Anyway... So what is boom and bust? And why should it be avoided? Boom and bust is a term that in relation to chronic illnesses such as M.E, Fibromyalgia and POTS (to name a few) is where you have a burst of activity as a result of feeling more energized and having a better day. Perhaps "overdoing it" because you want to make the most of having that much energy or wanting to get a task done, especially if you have been wanting to do it for a while but not been well enough to. It can be so frustrating lying there unable to do the simplest of tasks as all the things you want to do build up. Consequently you can then experience bust, a crash to earth as a result of the activity. Where your body feels physically and mentally assaulted. Bust is also known as payback or post exertional malaise, which is a defining symptom for M.E patients. This is because the mitochondria, the powerhouse in our cells that turns nutrients into energy, is defective. This means that once you have used up your energy it can take a long time for it to build back up. When experiencing bust some will of course feel silly for having essentialy made themselves feel that way. Feeling it is all their fault they are suffering as they are. But of course it isn't your fault. It's the illness. And the fact that you are ill is certainly not your fault.

 

So the question is should we avoid the boom and bust? The thing is each time we use up our energy we don't know just how much our body will react. Sometimes just walking to the bathroom and back will wear you out as much as a trip to the supermarket. Unlike our phones that easily tell us how much battery we have left our bodies don't. The fact that we are always at the mercy of our symptoms helps blur the lines even more. Predominantly our energy is used on things that we cannot really avoid just simple household tasks or things we need to do to look after ourselves. Especially if we live alone. And yes we can often 'over do it' because like I said the temptation to do as much as you can while you can is one we will often fall prey to. We can of course get help but unless we are completely bed bound then the ability to do things for ourselves is one that at least makes us feel that little bit more normal and not completely useless, because we often feel that we have lost our independance. However although they are necessary, these are only the smaller things, although of course to us they can also be big achievements and although they say life is made up of the smaller moments and I can see the truth in that statement I'm not sure that quite applies to household chores and making sure you eat and drink. If experiencing boom and bust can be so easily done by these smaller things then what about the bigger things? Should they be avoided at all costs?

 

It is the bigger moments that can really leave their impact, whether that be positive or negative. Sadly we can't really control some of life's sadder events or know when they are going to happen and of course that is going to cause a lot of post exertional malaise and much grief. Therefore in those incidents it is highly likely we will use as much energy as we have and ultimately boom and bust. Moving on to the more positive big moments/events that create fond memories and make up much of our achievements. From graduating, getting married, having children to the holiday of a lifetime or a gig you have always wanted to go to. When you have a chronic illness getting to achieve these things can seem impossible. Your head is full of questions and doubt. I will leave school/college with no qualifications. No one will want me now that I am sick and need a wheelchair. How will I ever even meet someone when I hardly leave the house? And when I do I am always accompanied. You worry that travel will be too stressful and painful and that you won't have the control you feel you need. That you are far away from where you feel safe and comfortable in an environment you are not used to. You also feel like you would let others down. That they may have to miss out if you need to leave early from an event and feel bitter towards you. You often think it's probably too much effort and too much risk, and therefore not worth it. And of course that ultimately you will experience post exertional malaise afterwards and feel like you have been in an accident not at an enjoyable event. And that's no fun at all! Consequently your quality of life can be poor and you feel like you are missing out on so much that life has to offer.

I was reading through an old blog post the other day called reminicsing, in which I was looking back to the time I was more moderately affected and the time shortly before I was officially diagnosed. In it I said " I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained."  This is certainly a philosophy I still try too live by. Even if it's not one I can put in to practise that often. 

 Recently I went to the theatre to watch Pasha Kovalev from Strictly Come Dancing. Words cannot describe the effect that man has on me, haha. It took a lot of resting beforehand and lying very still to have enough energy to go. This is another thing a clinic would advise against, oops! I was so very thankful that on the day I did actually feel well enough. Going to the theatre brings up a lot of other complications for me such as noise and light sensitivities but luckily I coped well. I had packed sunglasses just incase. Naturally when you are at a dance show you are going to want to clap along and applaud and when Pasha tells you to dance you're damn well going to shimmy for him. However I caught myself thinking a few times, perhaps I shouldn't be clapping as much or doing the wheelchair boogie. That I would have hell to pay for it in the coming week. But that thought quickly got lost as I was emerced in enjoying the show. After the show I wanted to go wait at the stage door to meet the dancers. Again I thought Siân you probably shouldn't push your luck here and just get yourself home and back in bed. But if you have a choice to meet Pasha and he is meteres away what are you going to do? I think you can already tell the answer to that from the photo above and let's just say it was totally worth it. I had an amazing evening. This was in part due to the beautiful message of the show, which was all about positivity and Pasha wanting to make sure his audience went away feeling uplifted.But also that because for a few hours I felt less like a poorly person and more of a normal person. So full of life and happiness I very nearly cried, but I didn't want to shed any tears on such a good night, even if they were happy ones. If I hadn't have been in a wheelchair I could very easily have believed I was. And that was such a wonderful feeling. 

The point I'm trying to make without gushing too much is that opportunities like that don't come around that often, especially for us. For me personally I try and grab them. Whether it be from a trip to the theatre to hoping to be well enough to go on holiday. I have to plan very carefully and be over prepared for every situation, but I try not to let that detter me. It was my choice to book the tickets and give myself that opportunity and one that could very easily have not worked out by not being well enough to go but at least I had gave myself the chance. I know some people will think that if you then don't get to go that you are going to be really disappointed and hateful of the illness; and yes it would be disappointing but it still hurts to know an event is happening and doubt stops you from booking. Sometimes you simply need to take a risk and hope it pays off.

I'm not going to lie and say that it didn't hurt or cause PEM afterwards because it did. That is the nature of the illness and something I expect. Suprisingly it wasn't nearly as bad as expected so I got lucky there. Plus as I recovered I got to relive the night many times in my head and that made sure I had the biggest smile on my face. The great memories outweighed any pain.

So maybe booming and busting is a bit reckless and not advised but it's up to you to weigh up that risk and decide if you want to be more responsible for not causing yourself extra suffering or more responsible for your happiness and quality of life. Perhaps I am coming at this from the perspective from a former sufferer of depression and anxiety who feels the added pressure of maintaining my happiness. And perhaps you would choose differently. I really can't say I blame you. Payback can be a bitch and be really hard to deal with. I'm lucky I have people to help care for me 24/7 that can help me through the worst of it but I still dislike being reliant on them for basic care on those horrendous days. I don't wish to force this opinion on anyone. We each have a responsibilty towards our health. I only wish to say that we all deserve to be happy. And if we have the power to control that sometimes then it can be worth taking.

Siân
X

* Please note that booming and busting should only be on ocassion and that pacing for the majority of the time is still important for maintaining your health. Also note that this post is not an advise post and that each individual should take responsibility for their own health and decisions. I am only expressing my opinion using my experiences. However I do wish that you can all be as happy as you possibly can. Having a chronic illness is hard and finding ways to keep positive are important.

Princess Interview with Princess Emma

When were you diagnosed? Were you ill for long before then? I was officially diagnosed with ME in June 2013. I became poorly in 2005 when I got Glandular Fever halfway through university. I never felt "right" after that !

What did you do before you had ME? Before I had ME I was a primary school teacher. I had been teaching for 8 years.

How did ME first present itself in you?
After getting glandular fever in 2005 I seemed to pick up every bug and virus going including swine flu. I kept going to the doctors as I didn't feel well but didn't know why an the doctors seemed reluctant to help. I would always feel exhausted and aching but at first assumed it was the fact I was a teacher so I forced myself to keep going. I changed doctors and thankfully my new doctor actually listened to me and began running blood tests etc as he felt I had ME. In February 2013 I became very unwell at work and ended up going to hospital. My mum described all my symptoms to one of the doctors and she asked if I had ME.

What is the biggest thing that you miss that ME has stopped you from doing?
The biggest thing would be having to give up my teaching career. Working full time was impossible. I could just about manage part time which I was reluctantly given by my employer who was asked to follow my occupational health report. Sadly I was told I would have to return full time or there would be no job as they couldn't have me work part time (despite other staff being part time due to having babies) so I had to leave. While I miss my friends and the children, there are aspects I don't miss. I had no work life balance and in a strange way ME allowed me to get more of my life back (as crazy as that sounds). I now work in social media and blogging, working part time and from home. A complete change of job and for less money, but I am happier and the job suits my illness.

How do you remain hopeful and/or happy?
I remain hopeful and happy mainly due to the wonderful people I have in my life. My closest friends have been amazing and are always there for me and very understanding of my ME. They often spot I am flagging before I do (I'm stubborn) so they force me to pace myself and they plan regular stops for me if we have a trip out. As one friend said "I don't mind sitting down and drinking tea, we are getting old and it's a great excuse for a natter". What I also love is that they don't see me as their "sick friend". They treat me as they always have done so I feel equal and I am always included. My online friends are also a great support and I love catching up via Instagram etc. My two cats are a great comfort to me too.

What were your reasons for joining The Princesses and ME/ Team Princess?
Apart from the fact I love princesses, I thought it was a great way to raise awareness. I have also made some lovely friends as a result of being part of Team Princess and I hope when our health is better we can have a princess get together.

Do you have any specific plans for what you are going to do for the event?
I will be dressing up as a princess and may attempt photos of different princess eg sleeping beauty, Cinderella etc.

If you had 3 wishes what would they be?

To find a cure for ME so my friends and I could be better.

To get married and have a family.

To be well enough to go on a roller coaster tour across America.

Which Disney Princess do you most relate to?

I always wanted to be Ariel when I was little, but I can't swim so I'd make a rubbish mermaid! I can relate to Beauty from Beauty and the Beast because I am caring and I like to see the good in people.

Thank you Emma for taking part in the interview. You can learn more about Emma and her story on her blog The Adventures of Little Me. This year Emma is raising funds for Invest in ME.

Get in touch if you would also like to join The Princesses and M.E this year and also if you would like to take part in an inerview to share your story.

Queenie x