Me, Myself and M.E: August 2015

Thursday, 27 August 2015

Travel interview with Hannah (including long haul)

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.

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

Sunday, 23 August 2015

Holiday Get ready with me

Here's my get ready with me holiday post. But one with a bit of a difference, not just a get ready with me for a day/night whilst on holiday but in this post I'm going to go into detail about how I prepare my poorly body to go on holiday. Covering everything from about 6 weeks to go until I leave for the airport. Although I'm writing from a chronic illness perspective hopefully this post will be useful for the organizers and planners out there too. Or anyone wanting to be more organized when it comes to holidays.

6-4 weeks before

Admittedly pretty much as soon as I've booked a holiday the next thing my mind turns to is clothes. I can't help it! And so the internet browsing amps up a notch, looking for some pretty new outfits. However it's good to see what you already have too. I like to have a trying on session just to be sure things still fit and if they don't I know then I need to look for alternatives. At this point I start thinking about what I want to take with me and the different looks I want to go for. I love to scour instagram and Pinterest for inspiration.

I like to mix and match possible outfits. Often I will lay them out on my bed (as in the photo above) and then see what other pieces will go with that. This is a good tip for if you need to pack light or pack a capsule wardrobe. It can also help you think about any other pieces that you might be missing. Or items you want to get to complete your holiday wardrobe. Get shopping.

Travel insurance- I make sure my travel insurance is still in date and if not that I take out a new policy. I tend to do mine online through the post office. It's handy because it allows me to input all my medical conditions online and not need to phone up.

If I'm going to Greece then in the weeks before I go away I like to brush up on my Greek and get used to speaking it again. I'm by no means at a level where I can have a long conversation but I can be polite and order in restaurants/cafes. To me this is something I enjoy doing and it makes me feel accomplished, at a time when I can often feel unaccomplished. Plus you're not just the person in the wheelchair but you're the one that can speak Greek too. I would recommend to anyone to learn a few words of the language where they are holidaying. It's polite and it's fun. Also because I'm in a chair there are times where the need to say thank you increases, so it's nice to be able to do so in the native tongue.

3 weeks before

Medication- Time to check if I have enough medication to take on holiday with me and if not that I order more. I say I but this is mainly my Mum then later on I will count out the meds I'm taking for my own piece of mind.

Pre holiday skincare routine- I use some more moisturizing treatments on my hair to get it ready for the heat. I try my very best to up my moisturizing too but I am generally rubbish at remembering, then moan when I look at my legs and they're scaley. I love the moisturiser sprays you can get now as they are so quick and easy. I love the Vaseline Cocoa one and the Palmers Rapid Moisure one too.

2 weeks before

I force myself to fine tune my choices of what I'm taking, especially in relation to clothes. I know that seems crazy early and the chances of changing your mind about 20 times in those remaining 2 weeks are high, but I at least like to have an idea. I will then separate what I intend on taking either at one end of my wardrobe or on hooks. It's good to check everything is clean too or whether it needs to go in the wash first.

Make a packing list- I list everything I am going to take and put it into sections, such as clothes, toiletries, make up, beach bag necessities, medical essentials and I write a separate list for hand luggage. I like to keep my lists handy so that I can add to it as I think of things, which is all the time. It's staggering how much you need to take with you.

I also make a 'last minute packing list". This is a list of all the things I can't pack until the night before or day of. Mainly these are medical related items like my heat pad (yes I take it with me everywhere, regardless that it's a hot country) that I may need until just before we leave. By making a list I know that these things that could very easily be forgotten will definitely get packed. On this list you could also put last minute things you need to do before you leave such as checking all the windows and doors are locked and that you have all your travel documents and passport.

Once I have written my list I then start to pull everything together and put all the things I will be taking together in one place. As I collect each item I put a tick next to it on my list so that I know I have it ready to be packed.

To be extra organized and save myself some time and energy once I get there I like to prepack my beach/ pool bag with my beach towel, sunglasses, book etc.

Currency- If you're going abroad, you'll need to order foreign currency. This can be done online for ease but sometimes there might be a minimum amount that you can order so you may need to plan to go to a post office or currency exchange desk. I think it's best to do this before hand rather than at the airport because you get a better rate and therefore a bit more money to spend.

1 week

Sort out plane "entertainment"- In my travel anxiety post I wrote that I like to have a playlist of relaxing music and guided meditations to help me should I start to panic. So during this week when I need to stay as calm as possible I go over my playlists and add newer ones, testing to see if they actually do help keep me calm or not.

I'll also browse Audible for a good audio book to download, that I'll be able to listen to on the plane. I found this really useful as it kept me occupied but didn't make me feel travel sick like reading a magazine or book would.

5 days before

Finalize handluggage- Well the bits that are not last minute items anyway. Again I know it seems early but it needs to be done. My handluggage always weighs a tonne, because it has so much in it. All my medication and various bits and pieces to keep me as comfortable and healthy on the plane. Plus I always pack a bikini in there, just in case my luggage goes missing. I struggle finding them in this country never mind a foreign one.

Rest!! The most important step of all. Generally the 2 weeks before I go away I try my best to make sure I have no plans, so I don't have anything to recover from. This means I can try my best to conserve that energy for going away. However in the 5 days before I go away this is when that resting steps up even more to being really restrictive because I am trying to make sure I get myself onto that plane in one piece.

Last minute beauty pamper- I try my best to get myself looking a bit less ape like and defuzz.

2 days before

Time to pack- Or in my case get someone to pack for me as I supervise and tick off each item on my packing list.

Day before

Lay out travel outfit- I try to be as organized as possible, so that the time before I go to the airport is as smooth running and stress free as possible. So I will lay out my travel outfit and have it all in the one place, including any underwear, socks (usually of the attractive flight sock variety) and shoes.

I will also lay out anything else I intend to use before I go. Again to make things as simple as possible. So I put any skincare or haircare products and make up I want to use, as well as my mirror on my nightstand for easy accessibility.

Cross my fingers and hope for the best- Even though I know I've tried my best to conserve my energy as best as possible to try and be able to go, I also know that sometimes that is not always enough. That my illness will get the last say on whether it's a green or red light.

Morning of

Assess- Sadly sometimes regardless of how much I have tried to prepare myself to go on holiday having a chronic illness means nothing is ever guaranteed, so the very first thing I need to do on the day of going away is assess whether I am actually well enough to travel. Am I well enough to even make it out of bed? This moment is critical and can be touch and go for anyone with a chronic illness. I would advise that you be honest with yourself and make a fair judgement. Only you know what you are capable of. Remember to let others know to check in with you that all is ok to actually go ahead. If all is ok then I go ahead and do the following steps:

Pack those last minute essentials- using the list that I made.

Get ready to go- I get ready at my own pace and as calmly as possible. Stress at this point is really not good, as it's going to drain you of energy really quickly. It's good to remind others of this too. Airports and travel can make people extra stressed but you need to put yourself into a bubble and just focus on each step you need to take to get yourself onto that aeroplane.

Final checks- Go over my list one last time to be reassured I have everything I need and done what I've needed to.

Take a deep breath and go- Off you go enjoy yourself. I always remember to give myself bit of a pat on the back at this point too and say well done, as well as be very grateful that i'm actually getting this opportunity to travel. Like I said it certainly isn't guaranteed that you'd be able to go so having a few moments of thanking your lucky stars I feel is a good step. on the journey to the airport I always try to rest my eyes as much as possible and use up as little energy as possible, because once I'm at the airport I'm going to need to focus. I also try to reman calm and take deep breaths to keep any travel anxiety under control. You can read my post on coping with travel anxiety here.

For more detailed information on any aspect of travelling with a chronic illness I have a whole series of posts, which can all be found by clicking this link, or by clicking on the travel tips page in the right hand column of the blog layout. There you'll find posts on everything from researching a holiday to how to cope during a flight. You'll also find interviews with others about their experiences of going on holiday as a chronically ill person.

My next post will be an interview with Hannah with an emphasis on long haul travel.

Sian X

Wednesday, 19 August 2015

Let's talk about me

Hi everyone,

First of all I want to say a very big thank you for the amazing response to my last blogpost Let me put this in a way you might understand. I am so humbled that so many people read it and for the lovely comments I recieved. Thank you to anyone that shared it, inparticular those that shared it with family and friends in the hope that they may understand what it's like living with M.E or chronic fatigue as a symptom. I really hope that it helped.

It's been a little while since I've actually done more of a chatty post and actually discussed how I'm getting on lately, so I thought I'd take the opportunity to do so now that I have quite a bit to say. You know what it's like, living with a chronic illness you spend most of your time feeling like you are just going through the motions, trying to keep your head above water and get through it. Admitedly I have been doing my fair share of this for a good while now. However it got to the stage a couple of months back when I thought stop! I'm actually tired of feeling so helpless and hopeless. I think some of this feeling was bought about during May and M.E awareness month, because it becomes even more of a focus and you see so many posts and tweets. In no way is that a bad thing, I commend everyone that really made the effort and put what the could into raising awareness. However as a sufferer there's only so many of those posts you can read and not be reminded that we have it tough, and not many people out there are offering us any hope. Which then leads on to thoughts of how crazy and neglectful that is, when there are hundreds of thousands of people who are incredibley unwell. It makes me sad and it makes me angry. Anyhow, these feelings made me think "am I actually putting up with this a little too much?" Let's face it if anyone else felt half as bad as we do for only a day they would probably go straight to the doctor or hospital. Yet because we know we have M.E, we automatically put up with it and think well it's just the old M.E. We're just so used to feeling horrendous and being told that there's not much that can be done for us. I think this can be dangerous sometimes, especially if we develop new symptoms, because we're not immune to other illnesses and conditions either. We shouldn't always put things down to the old M.E and neither should our doctors for that matter.

So I decided to make an appointment with my gp and talk a bit about how neglected I feel. Not neglected by them as a gp practice but because I feel so left out in the wilderness due to the lack of help there is for us in general. It really baffles me how so many people can just be left to suffer and nothing is done about it. It felt good to get things off my chest. My gp decided to run an armful of blood tests, to check how everything was. Or you know whether they still say you're a picture of health (eye roll), which of course they did. My folic acid was a little low which could have affected my fatigue level a bit, so I did have a course of that for a month to help boost my levels back up.

I took the opportunity to share some of the research that I've been reading about online. Inparticular the one about changes in the white and grey matter in the brains of M.E patients. If you would like to read more about this click here. This was one I resonated with, because a few months before I was diagnosed I needed to have an MRI scan because my prolactin hormones went a bit crazy due to some medication and anxiety. However when they did the test they found what they described as lesions and abnormal changes in my white matter for someone of my age. The neurologist I saw was a bit baffled as to why this had ocurred and why I was not having any physical symptoms. Apparently the findings were conclusive with mini strokes. However with my health seeming to be ok, other than my anxiety, we simply decided to change my medication and to monitor any physical symptoms should they arise. I did get retested shortly after my M.E diagnosis and things seemed to have stabilised. However when I read about this research it did make me think about this time and whether this was some kind of precursor for things to come. This combined with an increase in muscle switches lately encouraged my gp to write again to this neurologist to investigate further and find out whether there could be a connection. Who knows when that appointment will be though? I've not heard anything so far. Plus I'm not holding out too much hope for it seen as we're used to things not being that simple. But you never know.

Recently I read a blogpost by Jess at Why is life so lush all about how she had got her mitochondria tested through a blood test. You can read that post here. This blood test is not available on the NHS but is one of the tests offered by Dr Myhill. Jess wrote about how she had had the blood test and sent it off to their laboratory to be tested. Dr Myhill then analysed the results and sent the findings along with suggestions of future treatments that she recommended based on the results, to her gp. I've been reading a lot about mitochondria lately and I think it offers a real explanation as to why we feel as we do and how post exertion malaise is our enemy. Therefore I think getting this blood test would help in a way to have more tangiable proof that something is wrong not just feeling terrible and a whole heap of symptoms. Although part of me does think that mine will come back and tell me nothings wrong, just to bite me on the bum. I showed this to my gp and discussed it with him as I wanted to have his cooperation on it too. To be sure that he would take on board the results and suggestions and help me to implement them. This is not something he'd heard of, however he was keen for me to give it a go if it meant having answers and that he was made aware of things to try going forward. I think having your gp's cooperation on this is important as they are the ones that will recieve the information and who can hopefully help you afterwards. I'm sure some would disagree with it but luckily mine was willing to help. Unfortunately as it's not available on tbe NHS it's quite expensive, so I've waited a little while till I can afford it. Saving up for a blood test is definitely a new one. However in that time the site has gone a bit crazy and had a big influx of patients, meaning they've had to put a holt on any non direct patients for the time being. They reckon this is possibly the result of her new book Mitochondria not Hypochondria. So that was a bit annoying. In the mean time I've ordered the book in the hope that it holds some answers too. I'll be keeping an eye on the website for when blood tests can be reordered.

So that's pretty much where I'm up to lately. Trying to get by but at the same time being so fed up of just getting by. I need to try to stay as positive as I can but at the same time I recognise that getting upset and angry is ok. It doesn't mean I'm hurtling down that depression spiral. It just means I'm acknowledging that things aren't lollipops and rainbows and is it any wonder? It's healthy to acknowledge these feelings and let them out. I think it's a miracle how we're not breaking down more, with all we have to go through. Hopefully soon I'll be back to my chipper self.

I have a few other things I'm looking into to help me regain some control of my life and illness but I'll save them for another day when I'm a bit further down the line.

I hope everyone else is doing as well as possible.

Sian X

Sunday, 9 August 2015

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

Wednesday, 5 August 2015

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.

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

Saturday, 1 August 2015

Coping with travel anxiety

I wrote this post the night before flying and also whilst on the plane, therefore I hope that by writing this as I'm trying to manage my own travel anxiety the tips and advice I have to offer will subsequently be of good use to you too. So sit back, relax and enjoy- don't you just hate it when they say that?!

I'm lying here writing this waiting, trying to remain calm, trying to ignore that nagging in the pit of my stomach and creeping over my skin. Just trying to keep myself calm ready to travel tomorrow. I have suffered from travel anxiety for a good while now. Getting on a plane fills me with a sense of dread. I was fine for a short while after I started to fly again (I wouldn't do it for a few years) but then one bad patch of turbulence and a panic attack set it right back off again. It's funny because I can sit by the window and look out, especially during take off and landing. It actually fills me with awe every time, seeing the world from above, watching cars move along the roads and when you are above the clouds just looking at such a serene view of fluffy white clouds.

Fear of flying or travel is incredibley common, however it can stem from so many different root causes. For some it's the fear of not being in control. And I hold my hands up to that one. It's got slightly better as I've had to relinquish a lot of control to my illness and being used to not having the last say but prior to that I very much liked to be in control. A lot of people will tell you at this point that it's much safer than driving a car, however to the person that likes being in control, if they are driving they have the control, the decisions are on them and they can see what's going on. Now I for one would not like to pilot a plane but getting on a plane the fact you can't see where you are going can be a big deal. Especially during turbulence, you can't see those bumps in the air, like you would a pot hole and try to avoid it. But we do have to trust that these pilots are highly experienced and will do their upmost to make your flight as comfortable as possible. And apparently turbulence is perfectly safe.

For others the biggest fear is claustrophobia or fear of heights. Or it is as all consuming as being scared something bad will happen. I know a lot of people think about what they would leave behind should something happen. Getting on a plane confronts us with our fears yet many of us try to cope and deal with them the best that we can in order to enjoy seeing the world and go on holiday. We see it as a necessary evil. Although some simply don't put themselves in that position, and forgo flying all together. In all honesty I can't say I blame them, it's something I've thought about many times. Indeed I did for a while. However in order to begin to face our fears and try to find a way to cope it can be worthwhile to pinpoint exactly where your fear stems from. Get to the root cause of the issue.

Personally as well as having that need to be in control I think it has to do with long standing travel sickness issue. Many a car ride has made me green around the gills and I've never been able to cope with a fairground ride wilder than the carousel. So when I know I have to get on a plane I instinctively think this is going to make me unwell. As someone that is chronically ill and ill enough, feeling more sick makes me nervous. I hate vomit. Being physically sick scares me. I can't even stand listening to someone wretching, it gives me cold sweats. I won't even start on my 14 year battle with IBS. Again leading me down that 'I don't have control' route. And what's worse than when you feel like you're not in control if your bodily functions? Sorry TMI.

This is why when I fly I like to be extra prepared and know that I have everything I need to help me cope should I begin to panic. So below I will list a few of the things I do and the items I pack in my hand luggage that help me to at least attempt to be calm.

* Book a flight time that suits you. I like to fly early so that it's over with and I don't spend most of the day getting more and more worked up. Where as if I fly early I get up and go (not that I have much of that.) Also I've heard that flying early is when the air has less disruptions so you will hopefully experience less turbulence.

* Pick your seat carefully- Of course the main question is aisle or window? But also think carefully about where on the plane you would prefer to sit. If you can book a seat in the middle of the plane as this is the centre of gravity of the plane and by sitting by the wing it is the most balanced part of the plane, so you feel less bumps. Or if you are claustrophobic opt for a seat with extra leg room.

* I find guided meditation, mindfulness excercises and relaxing music really helpful. It's good to zone into and tune out of the panic of your current surroundings. If you know this works for you be sure to download them onto your mobile or ipod for use throughout your journey. By downloading them onto a phone or any handheld device it also means you can listen to them throughout take off and landing if you find those parts the most stressful.

* If you have never tried guided meditation, mindfulness or relaxing music, why not give it a try a few weeks before you fly. See if it helps you to feel calmer and zone out. Find one that works for you. Make sure that with any guided meditation or mindfulness that you find the person's voice soothing. There are some that might grate on you and that's not want you want when you are trying to remain calm. Also some soothing music you might find irritating. The sound of a waterfall might not be what you want to hear when you're confined to a plane seat. And some white noise sounds sound too much like rushes of air, again the last thing you want to hear. So experiment with what is good for you.

* I really recommend checking that you can listen to your playlist or any apps you have downloaded in aeroplane mode. I thought I could as I pay for spotify to listen offline for the very purpose of travelling. Yet here I am sat on the plane (Hi from just above Dubrovnik) and it won't let me play it. So test it out. I think the issue I was logged into Spotify through Facebook, which of course requires being online, not through spotify.

* Another option you may like to try to help you zone out is an audio book. I've recently been testing Audible to see how I got on with it. Apart from it being a bit wierd at first having someone else read a story in your head and it not being your own voice, and also falling asleep and missing half the story I thought it would be a great idea to help me manage during the flight. And I have to say here I am up in the air (Hi from somewhere over the Ionian sea) and I've found it really useful. Download a book that will keep you entertained, engaged but that doesn't have too complicated a plot that should you panic you can't follow the story. As well as any other aircraft noise. I recommend listening to a sample before you purchase, as again you may not like the voice of the narrator. Having a voice like Mummy Pig from Peppa Pig is a bit wierd to be honest.

* Pack a grab bag. This is one of the most important things I pack. As well as my main hand luggage I pack a smaller clutch bag to have by my side or in the pocket in front of your seat, if there is one. I've learnt that when I start to panic the last thing I need is to be reaching down, trying to grab my bag and find things just makes me panic even more. As well as makes me feel dizzier. However if I have them by my side and easily accessible, I can reach for them as soon as I need them without the faff. Even the thought of knowing it's there is reassuring. So what do I pack in my grab bag?

1. Face wipes- I use these to help cool me down. When I start to panic I start to feel really hot, especially my face so having these is great to dab at my face like an Victorian woman having an attack of the nerves.

2. Medication- In particular the tablets I need for the duration of the flight. Put any medication you might need throughout the flight in a little pot or dispenser so that it's easily accessible. That's what the little macaron you can see in the photo is. You may need your regular medication or have pain killers, anti sickness or anti anxiety meds handy just in case.

3. Lavendar roller ball- Although this has to be added after security with it being a liquid. I like to put a little bit of this on the inside of my wrists and inhale if I need to relax. If I get a headache or sore sinuses during the flight, which can easily happen due to the change in air pressure I roll some over my forehead and behind my ears.

4. Sweets and mints- A must for helping your ears cope during take off and landing. Mints can also be good for if you are feeling a bit nauseous. You may also want to try ginger drops.

5. Head phones- For listening to anything you've downloaded to help you relax or keep you entertained. Choose ones that are comfortable. I had inner ear ones as I found the new ones that came with my S6 really comfy, however after 2 hours my ears were quite sore. I think the pressure in my ears meant they became more uncomfortable. If you really want to drown out any other noises, especially if they freak you out, opt for noise cancelling ones. They might be expensive but worth it for the peace. Try to get ones that don't press on your ears but envelop them comfortably.

6. Phone- Simple really, for all your entertainment, relaxation and obligatory plane wing shots.

7. Travel bands- These aren't in my bag long as I put them on as soon as I'm in my seat. I use these to help me manage my travel sickness. Whether they're a placebo or not they have certainly helped me over the years. I even pop them on at home on days where I feel really nauseous.

If you feel travel sick looking out at the horizon can help you feel more balanced. Wearing sunglasses can also be helpful as when you stop looking out the window you can feel a bit dizzy from the change in the light. It's bright above them there clouds. Don't do anything that involves having your head down, like reading, as this will cause you too feel more nauseous. If you feel panicky or nauseous during turbulence don't look at the wings, watching them bounce will only increase your panic. Shut the window blind and focus straight ahead.

The day before lay out anything you will need for the day of travelling. Such as the outfit you plan to wear and toiletries you will need to use. Plus anything you will need to pack at the last minute.

Create a list of the items you need to pack last minute as well as anything else you need to do before you leave. For example lock all doors and windows, and checking one last time if you have your passport. Tick them off your list as you do them for that extra bit of peace of mind. Trying to remember if you have locked the front door because you were in such a flurry will cause more anxiety.

Before you leave check the live departure boards online to see whether your flight is on time. If there is a delay ring your airline for advise.

Be organized about how you are getting to the airport. Prebook a taxi etc. Don't wait until the day. The less stress surrounding the journey there the better. So opt for what works best for you. Would you rather the distraction of driving or would that cause more stress? Remember to check traffic conditions before you set off so that you can be prepared for them.

Finally I'm going to suggest some YouTube videos that are good for helping put your mind at ease before flying.

Watch "Fear of flying help video by Virgin Flying Without Fear on YouTube https://youtu.be/ayXvS5b9jVE

Watch "Air Turbulence Tips" on YouTube https://youtu.be/7Gao3SIT3IY

Watch "Working Through Travel Anxiety // My Experience +…" on YouTube https://youtu.be/sgGMN8f6Hs4

I hope that you have found some of these tips useful and they help you to cope with your next flight. Please share your tips too, as I would love to know what helps you.

Sian x