This is a photo that my husband took me of this afternoon. Lying in a darkened room, wearing an eye mask because even the light coming through the curtains was intolerable. I’m wearing headphones and listening to wave sounds because my wee neighbour is bouncing outside on her trampoline and the noise of it is painful. I was nauseous, experiencing muscle spasms, pain and feeling too weak to sit up or hold up my head.
I wanted to share this photo in the interest of honesty and openness. We’re all very guilty of carefully curating the image we present on social media, me included. I started my blog because I wanted to share the realities of living with M.E, to help raise awareness. I must admit, I still don’t like being too negative so I often try to downplay things or sugar coat them, which kind of goes against my reasons for starting this whole thing in the first place. I want people to truly understand what this illness is.
So, today I wanted to share this little dose of reality with everyone. Yesterday I went to yoga. It’s a class that is specifically for people with mild - moderate M.E. It’s all very gentle, done either lying down or sitting. Then I rested all afternoon, before watching Eurovision in the evening. That’s it. Didn’t run a 10k, didn’t do any heavy lifting, didn’t go out drinking til 3am. Just gentle yoga and Eurovision.
I know that lots of the people following me on social media also suffer with M.E or other chronic illnesses themselves, so they will know exactly what I mean when I say I crashed. This afternoon I crashed hard. It’s actually the first time in a while that this has happened to this extreme, and the worst of it passed quite quickly. That didn’t really make it any less unpleasant at the time unfortunately.
The truth is, we never really feel well. I honestly don’t actually remember what it’s like to feel 100% well anymore, it’s been that long. We have days that are better than others and days that are worse. When you do see us, it’s because we’re having a better than usual day and we’ve more than likely spent days carefully resting, in anticipation of spending time with you. When we do see you we, like everyone, like to put our best foot forward. We do our hair and make up, we smile and laugh and enjoy feeling normal for an hour or two. But we’re smiling through fatigue and pain, and all the while trying to keep a check on how much energy we’re expending so that we can try to temper the payback later. The horrible bit that no one else sees.
To my healthy friends and family, I know it’s sometimes hard to truly get what we mean when we talk about payback, or what a ‘crash’ looks like.
This is it.
In the build up to M.E Awareness Week, the advocacy group ME Action Network have asked the online community post on a new topic every day this week, to raise awareness of the ways in which the disease affects every day life. The topic for today is how M.E affects marginalised groups. Turns out I had too much to say for an instagram caption, so I decided to do a quick blog post about it.
I recognise that as a white cis woman I occupy a position of privilege. I have no trouble accessing healthcare and I don’t face prejudice (beyond the usual doubt that surrounds M.E). I previously earned a good wage but since I’m now unable to work, I’m completely financially dependent on my husband. Our financial situation has certainly changed since I became ill, but ultimately, we are comfortable and secure. I know that many are not so lucky.
In the arguments and debates that surround M.E, something I think gets forgotten about is just how easily this illness can drive people into poverty.
It’s true that some people with M.E are still able to work (although I know from experience that it comes with a huge physical sacrifice), some are really not well enough to work but sadly do not have the luxury of taking time off or even going part-time. Then there are the many who are too sick to even leave their beds, let alone maintain any kind of employment.
If you are too sick to work, then reasonably you would expect to be able to access support from the government, and yet I know from my own experience and from my discussions with other M.E sufferers that it is extremely difficult, if not impossible to qualify for any kind of benefits. You are met with doubt and suspicion at every step of the way. Too sick to work, and yet apparently not sick enough to qualify for financial support.
What happens then to the people who don’t have a partner to support them? Who don’t have parents on hand to help out with the cost of the food shopping, or the people who are parents themselves and have children to provide for? Who do they lean on when their disease makes it impossible for them to maintain full time employment, but the government refuses to support them? Where do they turn? Living with a chronic illness is stressful enough without the added worry of how you’re going to pay the rent each month.
To make matters worse, there is little to no treatment or support available on the NHS. Many people are forced to go private for treatment or tests, with many spending a fortune on supplements just to try to maintain the tiniest sliver of health or function. I really think people underestimate just how desperate people with M.E are to get well, and how much money they are willing to spend trying anything and everything just to get back to their lives.
Unfortunately, there are always those who are willing to exploit this desperation for their own gain. Enter the snake oil salesmen. You’d be amazed how many private ‘treatments’ there are available for M.E - usually involving some kind of therapy or ‘retraining’ of the mind in exchange for a large payment. Maybe it’s worked for some people, but honestly the ways in which these treatments are marketed to prey on seriously ill people who are at their wit’s end and out of all other options just doesn’t sit right with me.
That’s why I believe it’s so important to make noise and advocate for change. I know it probably gets tiresome for some of my friends to see me constantly banging on about this all over social media, but it’s the only kind of activism I can partake in and I truly believe that if the M.E community continues to bang our collective drum loud enough, then someone has to listen eventually and perhaps things will finally change for the better.
Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if you want to be posh) wheelchair user and how I have grown to love my once-loathed Hot Wheels. Full disclosure: this post contains zero cat content.
The journey towards acceptance of my limitations has not been smooth or easy. The first time I used a wheelchair was when my husband and I were flying home from Italy for the final time. I knew that I would find the travelling absolutely exhausting, so was advised by friends and family to make use of the special assistance through the airport, to avoid over-exerted and the subsequent payback that comes with it. To say that I was not keen on the idea would be an understatement. I was so embarrassed at the thought of someone seeing me in a wheelchair, which really doesn’t sound good when I say it out loud. It’s not that I had ever or will ever think of being in a wheelchair as something to be embarrassed about, it was more that I was still in denial about my condition and hadn’t yet made peace with what my body was no longer capable of. How had I gotten here? How could I have gone from fit and active to wheelchair-bound in the space of a year or two? And how could I really need a wheelchair when I didn’t even have a ‘serious’ illness? People would think I was faking, or that I was doing it for attention. Everyone in the airport would stare at me, knowing that I didn’t really need that wheelchair.
As it happens, no one gave a toss except me and it really did make the whole process much more manageable.
A few months after moving home, we got our own wheelchair and I began to use it more regularly. I expected that over time I would become less uncomfortable, but that wasn’t quite the case. Whenever I was using my chair, I found myself making jokes about it - or myself - a lot. I convinced myself at the time that I was doing it to make everyone around me more comfortable. I know it wasn’t easy for some people to see me in the chair initially, so I found humour to be a helpful defence mechanism for putting everyone at their ease. I would shout “it’s a miracle!” whenever I stood up out of the chair, or quote Brian Potter from Phoenix Nights. It soon became apparent, however, that the only person truly uncomfortable with it was me. I was making these stupid jokes for my own benefit.
So why was I so uncomfortable? When I confessed to my husband that I felt everyone would question whether I really needed the chair, he asked me a very simple question: “when have you, or anyone you know for that matter, EVER questioned someone’s need for a wheelchair?” Well of course I bloody hadn’t, and I don’t know anyone who would, so why did I think everyone around me would suddenly turn into the DWP and start asking me to prove myself. It was utterly nonsensical.
As I continued to ruminate on this (and believe you me, I have a lot of time on my hands these days so I can ruminate with the best of them), I started to question whether my discomfort with my wheelchair was part of some wider social stigma or prejudice that I had unknowingly internalised? Did I view having a disability or using a mobility aid as something shameful? Absolutely not. So it was difficult for me to understand why exactly I was now judging myself for needing a chair. I knew I felt embarrassed about it, but I couldn’t quite get to the real root of the issue. Why did any outing leave me a sweating, anxious, apologetic wreck? Whenever I was out in the chair, I could physically feel myself shrinking into the smallest version of myself, in the hopes of not being seen or noticed.
I mentioned this to my Occupational Therapist during one of her visits and she told me that one of the hardest things for people with M.E to do is accept their condition. To go from living a fit, active and busy lifestyle to being housebound is very hard to swallow. To do so thanks to an illness so heavily entrenched in stigma and disbelief is even harder. Imagine how devastating it is to have your life brought to a crashing halt by a disease that can’t be treated. Imagine how much more devastating it is that many still hold the belief that your disease isn’t even real. When faced with all of this it can be hard not to doubt yourself at times, not to question if you are simply not doing enough to get well. Maybe if you just pushed yourself, you’d start to improve? Maybe it is all in your head after all.
It would appear that the only prejudice I had internalised was toward my own bloody condition.
After much soul searching, I realised that the reason I worried that people would think I didn’t really need my chair because I still couldn’t quite accept that I needed my chair. I had been viewing it as a concession, as if by relying on my wheelchair was somehow ‘giving in’. It was my mum who pointed out that the chair was simply the difference between doing something or staying in the house, and it was this that helped me begin to see my wheelchair not as something I was surrendering to, but an aid which actually empowers me to take part in activities that would otherwise be impossible or unachievable.
Since becoming an ambulatory wheelchair-user I have connected with others in my position via social media and have learned a lot about the ableist language and attitudes that are still extremely prevalent today, and just how damaging these can be. Earlier I used the term “wheelchair bound”, but I have come to realise that language like this is all part of the problem. I am not “bound to” my chair, my chair is my freedom. I am limited at the moment, so my chair is holding up the fort me. It is doing the work that my body can’t manage just now. Although I continue to hope that my limitations are not permanent, I am learning to make peace with them in all of their various forms.
And so, to my little Hot Wheels who I have mistreated and resented for far too long, I would like to offer an apology. Not only have you taught me to worry less about what other people think, you’ve enabled me to do things that would have been impossible without you. You helped me get to Oslo to watch my brother get married, you took me back to Milan to see my pals, you made it possible for me to stroll (well, roll) along the seaside. You’ve taught me a lot about acceptance and self-love, and to give significantly less f**ks about other people’s opinions of my illness.
Lastly, you’ve also helped me get the best parking and queue jump like a boss. You’re the best.
Hello and Happy New Year!
I hope you all had a very merry festive period. If you’re reading this and you have a chronic illness, I hope you managed to join in at least some of the fun without too much payback.
I’ve been finding it quite difficult to write much of anything lately. Living with M.E can be really all consuming at times. For the most part I feel like I’m managing it all well and I manage to stay positive, but winter has been difficult. Despite my best efforts, the many germs that do the rounds at this time of year have taken me down several times (special shout out to my Primary School Teacher husband for kindly bringing so many of them home), and I seem to have developed a couple of new food intolerances. I’m currently conducting yet more ad hoc investigations into that, trying to rule things out and find the culprit. Think of me as Sherlock, only with a Lancashire accent and a cat instead of a Watson.
I also got a bit overcome with Christmas excitement and tried to do too much, so spent most of December in a cycle of ‘boom and bust’ – trying to do the things then crashing for a week, before picking myself up and foolishly attempting to do the things again, therefore bringing on an even worse crash. It’s a vicious cycle and one that is not easily unlearned.
If I’m being completely honest, I’ve found Christmas and New Year quite mentally and emotionally draining on the whole. Even though I had some lovely, fun family time over Christmas and spent New Year relaxing and catching up with very dear friends, it’s tough to have fun knowing all too well that no matter how well you pace your activities your health will take a huge hit for you having joined the celebrations. I’ve also found that while social media can feel like a great distraction and connection to the outside world when you’re a housebound hermit, it will turn around and punch you square in the face come December. It’s really quite difficult to see all your friends’ social media feeds full of parties and festive cocktails when you’re stuck in bed, having been too sick to shower for the fourth consecutive day. It reminds you of what you’re missing and what you’ve lost. It’s equally hard when people start posting their ‘best of’ photos around New Year’s Eve - looking back at all that they achieved in 2018 or all the fun they had. While I obviously don’t begrudge my loved ones their happiness and accomplishments, it can be hard to feel that all you really did this year was survive.
And yet, despite what people may present on social media, I know that it isn’t real life and that the festive period can be mentally and emotionally difficult for many people, for a number of reasons. So if you’re reading this and found that you felt quite gloomy at times during the festivities, then I guess I just wanted to let you know that you’re not alone in that and I hope that you have good people around you who you can talk to or at least binge-watch RuPaul with until the gloominess doesn’t feel quite so heavy.
Now, on to happier things! Although 2019 hasn’t gotten off to a great start on the health front thanks to another stomach bug – I do have some exciting things ahead. Sadly, my dreams of opening up a cat sanctuary/mansion are still a long way off but I do have a few things in the pipeline that I’m really looking forward to and have a lot more to say about how my Perrin treatment is going, so I’ll hop to it and get to writing about it all soon.
For now, I hope January is being kind to you and that your New Year is off to a flying start.
And to those of you reading who are living with an illness like mine, then well done on simply surviving and getting up every day. I think that deserves a toast (of herbal tea, in a quiet environment of course).
Ciao for now,
Part 1: An Introduction
At the end of August this year I hit a particularly low point. The unusual heat wave was wreaking havoc on my symptoms, I had just lost my beloved cat, Bruce and I caught the stomach virus from hell in June, which my body was STILL feeling the effects of two months later. I wasn’t really getting much medical support for my condition at all and was frustrated by my slow progress. I felt as though I had been written off and left to fester. Quite frankly, I had simply had enough of life with M.E.
In a desperate bid to find something, ANYTHING that I hadn’t tried yet I went on yet another research mission online and came across an article about a 34 year old woman who had been living with M.E since she was a teenager, and who had made huge progress in her recovery thanks to something called The Perrin Technique. (You can read that particular article here, if you’re interested)
I did more googling and came across Dr Raymond Perrin’s website, where he explains his theory behind the development of The Perrin Technique, and to be honest, it all sounded very plausible based on what I had learned through the M.E clinic and through my own research around the condition. I started to read the testimonials from people who had undergone the treatment and I couldn’t believe what I was seeing: many were saying they had made a complete recovery and were back on their feet.
The one testimonial that really struck a chord with me, however was from a lady who said she was now more or less able to live a “normal life”. Those words were music to my ears. Normal life - a job, exercise, seeing friends, going for walks, doing the food shopping, starting a family - all those regular, run-of-the-mill things that we take for granted until they suddenly become unavailable to us.
I frantically began searching for local practitioners and as luck would have it there was one based at a physiotherapy centre right here in Wigan. I don’t think I’ve ever loved Wigan as much as I did in that moment. I called and made an appointment for a consultation almost immediately. Some of my friends and family encouraged me to be cautious and not to get my hopes up for a miracle cure, which was fair, but to be honest my expectations of anything being that simple or easy with this condition were extremely low at this point anyway.
Since coming home in February, I was being supported by the M.E clinic to learn how to better pace my activities and how to use rest and mindfulness techniques to help my autonomic nervous system to calm the hell down. This was all helping, of course, and pacing and rest remain two of the most crucial elements of managing life with this condition, but if there was even the slightest chance that this new treatment would help to speed things up a bit I had to try it. I always have been an impatient little shit.
The Science of It All
You saw me just reference the autonomic nervous system earlier, and I know you were super impressed by my scientific chat so here’s some more for you. The autonomic nervous system Is made up of two different ‘bits’ (blowing you away with my technical terminology); the sympathetic and the parasympathetic. People with M.E suffer from an overstrain of the sympathetic nervous system because our bodies are basically malfunctioning and breaking down. Our bodies can no longer create the necessary energy needed to complete tasks. To fix this problem it activates the sympathetic nervous system, also known as ‘fight or flight’ mode, and begins to run on adrenaline. The sympathetic nervous system increases heart rate and blood pressure and directs blood and oxygen to the organs and muscles most needed in a ‘fight or flight’ situation: the heart, lungs, arms and legs.
This is a natural function of the human body, dating all the way back to when we had to face woolly mammoths and the like, and had to decide whether to try to take them on or just do one. When a healthy person experiences this, their bodies will eventually return to normal once the risk (be it Jurassic or otherwise) is gone. The lactic acid will drain from their muscles, their heart rate and blood pressure will slow down and the autonomic nervous system will switch from sympathetic, back to parasympathetic. This is crucial because the parasympathetic nervous system is responsible for the ‘rest, digest and recover’ functions of the human body and, perhaps most crucially in this case, energy conserving.
Although the two together make up the autonomic nervous system and both are necessary, only one can be activated at a time. So if your body is consistently having to run on adrenaline, as is the case with most M.E patients, your body is not getting enough opportunity to rest, digest or recover. You can see how this would cause problems over time. Dr Perrin says that one of the main problems that this can cause for M.E patients is a build up of toxins and fluid around the brain and spinal cord. Sounds fun, doesn’t it! Thankfully, this is precisely what The Perrin Technique aims to remedy. Fingers crossed.
Thank you for reading Part 1 of my Perrin Diaries, tune in next time when we will be talking about how exactly the technique works and how I feel about it now, with 12 weeks of treatment under my belt.
Quick disclaimer before I finish: I’ve tried my very best to explain all the science behind it all and although I am pretty clued up at this point, I am obviously neither a scientist or a medical professional so please do consult the internet to fill in any gaps or learn more. If you are a medical professional or scientist and have spotted an error then I apologise, but I tried my best with my poor, inflamed brain SO SUE ME. Don’t really though, I’m skint.
See you next time!
I’ve often heard it said that when a person gets very sick, it can be almost as hard for the partner or spouse as it can for the person themselves. This is something I have thought about a lot lately. How difficult it must be to stand by and watch your partner suffer, knowing that you can’t make it better or take any of it away. I’m lucky, my illness isn’t life threatening * but it is certainly life changing; not just for me but for those closest to me as well. None more so than my husband. Now, those of you that know me know how uncomfortable I am with public displays of affection. In fact, I like to pretend I don’t even really like my husband that much at all. Keeps him on his toes you see. The rest of this post is going to be agony therefore because, dear reader, I am going to suspend my cynicism and discomfort and dedicate this whole post to my rather excellent husband.
My husband and I have been together for nine years after meeting/being set up by a mutual friend in the very glamorous, extremely romantic setting of Bamboogy Bar in Wigan. We married two years ago, sweating serenely under the Tuscan sun in the company of our nearest and dearest, and to be quite honest life has been a total laugh riot ever since. I sometimes wonder if he thinks I’m just putting the ‘in sickness and in health’ vow to the test a little extremely lately. (Either way, he passes on that one with flying colours. Which one should I test next?) It goes without saying that these first two years of our married lives have been more than a little bit challenging for both of us. So much has had to change in such a short space of time that it left us both reeling. Throughout all of it though, he has been such a constant source of comfort and support to me that I honestly don’t know how I would have coped without him. (Oh lord, if only you knew how much I cringed writing that – it was worse than having to kiss him in front of everyone at the wedding!)
When one person in a partnership becomes unwell, it inevitably changes the dynamics within the relationship. Even when one of you has a cold, the other naturally picks up the slack for a while. So when it’s something more serious, something chronic it means a lot of responsibility falling on the shoulders of one person. I was always independent and liked to do things for myself (ask my mum about my toddler tantrums) and am a bit of a perfectionist. So much so that it pains me to watch my husband do the dishes and not stack them in size order in the drainer, and don’t even get me started on way he ‘organised’ the spice cupboard in our new house. He on the other hand, is very laid back and couldn’t really care less about silly little details like a disorganised spice cupboard (the absolute sociopath). Over the past couple of years his role has transitioned from that of husband and some-time pest to carer, chef, cleaner, personal assistant, hairdresser and therapist - all rolled in to one handsome, red-haired package.
Monday to Friday he gets up, goes to work (teaching – which is exhausting at the very best of times), comes home and prepares dinner, does any housework that needs doing, gets his marking and planning done and then usually has to sit through my daily slide show of photos I took of the cat whilst bored at home all day, before then helping me to get ready for bed. Then on the weekends he does yet more housework, food shopping, more school work and if we’re lucky we manage to go out for a little mooch in the Hot Wheels, or a short walk if I’m feeling up to it. Then it’s back to a quiet, dark room for me to recover. What a fun wife he has! Sunday afternoons he spends batch-cooking so that I’ll have ready-made meals to eat during the week, because most days I’m not able to cook for myself from scratch.
On my bad days he has to help me bathe, wash my hair and dress and let me tell you, nothing spices up a marriage quite like your husband trying to pull your skinny jeans up over your arse and asking if they’ve shrunk in the wash. No dear, that’ll just be the carbs. On my very worst days at the beginning, he even had to help me to drink and feed myself because I simply didn’t have the strength or energy to lift a fork to my mouth. I am learning to manage much better but there are still days that he has to sit by whilst I struggle to keep a handle on my pain, and watch me cry with frustration when it all just gets a little too much. Somewhere in between all of that we try to make some time to just be a happily married couple in our early thirties.
My husband and I used to live very active lives; we cycled to work and back every day, spent our weekends hiking, we enjoyed camping and travelling together. I loved to outrun him in the park and he loved to avoid that by going out to play squash and football with his friends instead. It wasn’t just me that my illness took all of this from, it was him too. His life has been drastically changed by all of this as well and it takes its toll, mentally and emotionally. We’re both grieving for what has been lost and we are both working hard to stay positive every day, taking the small victories when and where we can. We are learning to live with our new normal, all the while not giving up hope that this is a temporary situation (the M.E, not the marriage!).
Looking after someone else’s needs 24/7 doesn’t leave much time for you to think about your own and sometimes when I look at him he just looks so exhausted that I could cry. There is so much guilt that comes with being chronically ill and despite his protestations, I worry that I’m holding him down and that being married to me is a drain on him. He doesn’t like it when I say things like this but it’s impossible not to feel this way sometimes. He rarely allows himself time to go out and just have some fun because he doesn’t want to leave me alone at home. I think sometimes he feels guilty about going out and enjoying life, when I’m stuck in the house unable to enjoy it much at all most of the time. Don’t get me wrong, of course we still have fun – how could we not, I’m a hoot! We are learning to enjoy the little things in life now like enjoying a coffee together in the back garden, doing crosswords or playing boardgames and of course being complete and utter die-hard Strictly Come Dancing fanatics (yes, we are 80 years old).
Of course it’s not always enough and there are days when our hiking boots are calling to us and we just want to be up a mountain, but he never complains or allows me to feel guilty about this. He just plods on, making sure life is as easy as possible for me. He is the very definition of a good egg.
So I guess what I’m trying to say is that if you know of anyone who is suffering with M.E or any other kind of chronic illness and you want to help, then don’t forget their partner for whom this journey is just as exhausting. Offer to take them out for a beer or a walk, whatever it is that they find fun and relaxing. Be a supportive shoulder to lean on. By helping them, you’re also helping the person suffering with the illness because the last thing we want is for our partners to not be able to enjoy life. To be honest, it’s nice to live vicariously through them sometimes too. Finally, if you would like my husband to live to see 32 you’ll offer to come round and help him organise that bloody spice cupboard.
*(Earlier I said that M.E isn’t life threatening and it isn’t, not at my stage anyway, but a young woman did pass away this year from severe M.E. Her name was Merryn Crofts and I think it’s important that people know about her. You can read about her here)
As some of you may know I recently travelled to Oslo to celebrate my brother’s wedding. It was a beautiful day and a great time was had by all. When my brother and his girlfriend initially announced their plans, I was excited – I had always wanted to go to Oslo and I couldn’t wait to celebrate their big day with them. With that excitement however, also came anxiety. How would I manage a big journey like this? How could I enjoy myself but not make myself ill? If you have a chronic illness like M.E then chances are you know very well that this feeling generally comes before any event, large or small. How will you pace it? How bad will the payback be? Is it even worth it? Of course there was no way on earth I would miss my own brother’s wedding, so here’s how we made it as M.E-friendly as possible.
1. Prep like a boss
This trip to Oslo was my first big journey since I flew back from Milan in February and I experienced a pretty big crash after that. I was determined that wouldn’t happen again, I wanted to be on my best form for the wedding day. My best advice to you, if you either have M.E or are travelling with someone who does, is to start organising and packing as early as you can. Write a list a week or two before of the things you’ll need to take with you and start to slowly pack what you can in small bursts to avoid over exerting yourself. Perhaps most importantly though, lean on those around you - even if packing seems like a low energy activity, it is still draining your battery so if someone else can do it for you, let them. In the week leading up to the trip I tried to do as little as humanly possible to conserve my energy for the journey, and I let other people pack my bags for me. Just maybe don’t tell airport security that…
If like me your mother happens to be a nurse at your GP and therefore acts as your medical secretary, then chances are that you’re already super organised with your medication. If not, then check your prescription(s) ahead of time to ensure you don’t run out half way through your trip. My family and my husband had to help me to remember to keep on top of my pain meds every 4 hours. I usually try to take the pain meds only when things get unbearable because they’re pretty strong and can sometimes make me feel a bit out of it, but I think it’s important when you’re exerting yourself more than usual to be extra vigilant at staying on top of your pain levels to avoid a crash. This really helped to make the whole trip more manageable and enjoyable. Turns out everything is easier to cope with when you’re high as a kite. (Joking, mum!)
2. Me and my Hot Wheels
As I would be travelling with my wheelchair, we made sure to book airport assistance for both journeys. I’d recommend this even if you have M.E but don’t regularly use a wheelchair, simply because you will save so much energy by avoiding the long walk to your gate and standing in long queues at security. Airports: another thing I never thought of as a particularly ‘athletic’ activity until now.
*Fun fact: evidence shows that 97% of M.E patients have some form of Orthostatic Intolerance. Which means that standing upright in one position for too long can lead to dizziness, weakness and nausea, which is why standing up in a queue for a long time can be tricky. I know what you’re thinking – is there no end to this rollercoaster of fun?!*
The assistance at Manchester wasn’t brilliant but at different airports I’ve been allowed to bypass queues and go to a separate security gate, which takes so much of the stress (and noise) out of the whole process (plus you feel like an absolute baller flippin’ the V’s to all the regular chumps as you breeze on past to the front of the queue. Who’s laughing now, you healthy losers!) It’s really easy to add assistance to your booking online and comes at no extra cost.
We also carefully researched the journey from the airport to our apartment to make sure it would be manageable (something to consider carefully before booking accommodation) and researched how accessible the transport would be. Thankfully, most of the public transport in Oslo was wheelchair friendly, so I didn't have to get out and walk too many times, thus managing to avoid the looks of awe on people's faces when they think they are witnessing a miracle.
3. My Travel Non-Negotiables
We all know how noisy airports can be, so this was an element of the trip I was dreading, as well as all the germs flying around in the air con on the plane. Think very carefully about what you will need to make your journey as comfortable as possible before you travel. I also sought advice from my Occupational Therapist at my M.E clinic who had some useful advice for me, so make sure to utilise all the help you have available to you and ask other people what has worked for them. In my hand luggage I packed the following:
Just knowing that I had my emergency stash on hand made me feel more comfortable throughout the trip, and I although I had a pretty big crash after coming home and subsequently spent a week in bed, I have yet to contract an air con induced cold, so good work Vicks.
4. Food, glorious food
I won’t go on too much about food because it is my greatest love in this life and I could wax lyrical about it all day, and also because I’ve had such a roller coaster journey in trying out different diets to help manage my symptoms that it deserves a whole blog post of its own. I have spoken to so many people with M.E online who are able to manage (albeit in small ways) some of their symptoms by following a very careful diet. I was also advised by my consultant that eating little and often, rather than eating three large meals a day was more suitable for people with M.E because our digestive systems don’t quite pull their weight, the lazy idiots. With all of this in mind I made sure to pack snacks and lots of them, and to seek out a shop on arrival so that I could buy my staples – gluten free bread, non dairy milk and plenty of fruit. We all know that one of the best parts of going on holiday is committing yourself to happily gaining about half a stone as you allow yourself some time off from eating sensibly. Alas, not this time. I’ve found that the slightest change to my diet can affect my symptoms in a big way; making me even more fatigued or causing terrible stomach cramps, so it’s important that you try to maintain your regular diet and try to avoid throwing your regimen out of the window. Thankfully I’ve never yet had a bad reaction to gin so hurrah for small mercies!
If all of that sounds really bloody boring and you want to just let your hair down for a few days then make sure you take your supplements, kids! My liver doesn’t function as well as it should so I take Milk Thistle to help flush it out (also helpful in enjoying the above-mentioned gin). I rarely eat meat so I take L-Carnitine to supplement my diet and I take vitamin B, Q10, L-Glutamine and loads of peppermint tea to give my digestive system a much needed kick up the arse. So if you want to go mad and eat a cheeseboard or have cocktail (I strongly believe that a little bit of indulgence does you good sometimes), then I suggest taking the relevant supplements along with you because it helps minimise the inevitable payback. If any of them are in powder form I recommend getting a letter from your doctor to take along with you to avoid any embarrassing run-ins with sniffer dogs.
5. Pace yo self
Those of you that have M.E or other, similar chronic illnesses know that one of the most important ways in managing your energy and symptoms is pacing. While this is undoubtedly helpful, it is also one of the hardest things to master. When I was first diagnosed I was told to always bear in mind that whatever I think or feel like I can do, I should cut it down by half and then half again. This is not so easy to do when you’re beholden to a travel schedule, so the best advice I can offer here is to just shut up, literally. I never realised how much energy is taken up by talking until I got sick! At several points throughout our stay in Oslo I put some calming music on my big old headphones and just shut myself off from what was going on around me. If you’re a worrier like me and are anxious about coming across as rude or antisocial, just explain your reasons for this and people will understand (and if they don’t then why the hell are you going on holiday with such insensitive gobshites?) Taking little breaks from joining in the conversation and cutting yourself off from too much sensory stimuli can really help you to save up little pockets of energy along the way.
Learning to live within your energy limits is so difficult because it means leaving before you’re ready or calling it a day when you’re having fun and just want to stay out for longer. This is crucial though to avoid crashing as the more crashes your body has the harder your recovery will be. Before flying I had my doubts about taking the wheelchair with us as I still struggle a little with feelings of guilt at people having to push me around or adapt their plans to suit me. I’m also not yet entirely comfortable using it out in busy spaces, I’m still getting used to it. My family wanted to do some sightseeing whilst there and I had resigned myself to not being able to join in, but thanks to their insistence that I bring the chair I managed to see some of the city, enjoy the sunshine and go out for lunch - something I haven’t been able to do in a very long time!
I still struggle to walk for more than about 15 minutes, anything exceeding that always brings on a big flare up of symptoms. Had I been on foot in Oslo I would have missed out on so much. I used to see my wheelchair as a concession or a mark of defeat, but now I’m learning to see it as a tool to help me pace my physical activity, so I can actually get out and enjoy life a little more.
Next step now is to accessorise it for different occasions. Any and all Halloween suggestions welcome, though preferably cat related. Obviously.
Thank you so much for taking the time to read my blog. If any other chronically ill cool dudes like myself are reading and want to add to my list of suggestions on how to make travelling more manageable, I’d love to hear from you. I’m still getting to grips with it all and always happy to listen and learn from other’s experiences. I also just want to clarify that many people with M.E would not even be able to contemplate going on holiday, especially not abroad. It is not at all possible for them and would make them severely ill. This advice only relates to people with ‘mild to moderate’ M.E like mine. A lot of it could be adapted to work for a short train or car journey, as I’m a firm believer that even a short and relatively close by change of scenery does the soul good (as long as it’s not going to make your illness worse) and that there are plenty of ways that travel can be managed to make it more bearable for people with chronic illnesses. I have written to Manchester Airport to make some suggestions about how they could make improve the service they offer for people in wheelchairs and people with nervous system disfunction. I’ll update you on what comes of it.
As ever, onwards and upwards!
So, your friend, partner or family member has M.E? It’s really crap for them, I know. What can you do to help and support them you ask? Well rather conveniently for you, here are my five top tips:
1. Google is a friend of mine
I’ll be honest, I knew very little about M.E before getting sick and as it is a widely misunderstood illness, I don’t expect friends and family to be experts on the subject by any means (because neither am I!). That being said, it can be really tiring to have to explain your condition to everyone all the time, so it always means so much to me when someone has taken the time to google my condition and spent some time reading up on what it actually entails (quick caveat: Mumsnet style lectures about what your loved one should be doing will likely not be welcome). Not only does this show a willingness to understand what your loved one is going through, but it has also saved me personally from having to give my “M.E in a nut shell” presentation. I’ve had to do that so many times that I did once consider putting a power point together so I could just point instead of having to talk. By actually taking the time to do some research it allows you to ask your loved one informed questions about their symptoms; providing them with much needed emotional support and saving people like me having to write boring old lists like this.
2. Please keep the noise down
As I mentioned previously, sensory sensitivity is a very common symptom of this condition. People who suffer with severe M.E often have to spend their days lying in a dark room, wearing noise cancelling headphones and avoiding touch as much as possible. I am more fortunate, my M.E is what they call ‘mild to moderate’ therefore I only seem to suffer from noise sensitivity. I’ll be honest with you, having any of this referred to as ‘mild’ is a kick in the teeth. I did suggest a better term might just be ‘varying levels of ongoing shit’ but I couldn’t get the NHS to sign off on that. Anyway, it turns out that noise is a pretty hard thing to avoid altogether. Not least because of my own ridiculous cackle of a laugh. How does one train oneself to laugh more quietly? Answers on a postcard please.
If you are lucky enough to spend some time around the absolute party animals that we M.E sufferers are, please be conscious that too much sensory stimuli can cause a flare up of symptoms. Just check in with your loved one – is this environment ok for them? Would they prefer to move to a darker/quieter/more comfortable location? I personally can’t cope in cafes; all the banging and clattering of cups and coffee machines on top of all the chatter causes me to start burning up and sends my nervous system into complete meltdown. One of my coping strategies has been to carry ear plugs or noise cancelling headphones on me at all times, just in case. One cannot reasonably expect the whole world to mute itself just for you, but if you could all just talk a bit more softly and only one at a time that would be ace. For my part, I’ll work on my laugh too because that bad boy is loud with or without M.E.
3. Practical help
People with M.E are basically a phone battery that only ever charges to about 10% and must be extremely careful how they use what little charge they have, in order to avoid draining the battery altogether. You know that feeling when really want to read and reply to that message you just got but you’ve onlygot 2% left so you’re not sure whether to just flight mode it? That’s basically how a person with M.E has to manage their health on a daily basis. It takes less than you might think to drain our batteries too - a shower, washing the dishes, walking up and down the stairs – these have all been marked as ‘high level’ activities for me by my M.E clinician. General household tasks have become the sole responsibility of my husband. This time last year I couldn’t stand up long enough to even heat up a bowl of soup some days, so my husband had to become the king of meal prep and bedside table picnics. Thankfully I’m doing better now but I do still find household tasks very tiring, so a lot of it still falls to my husband (or my parents, who I am lucky enough to have just next door now). This can lead to a lot of guilt on my part at watching my husband have to teach all week and manage all the housework on his own. Even when people (very kindly) say that they are happy to help, it can be difficult or awkward to ask. It is beyond frustrating to be housebound and unable to run errands or generally just do most day to day life admin for yourself. That loss of independence and dependency on others can be tough to swallow. When people offer, it takes away the sense of shame one can often feel in asking. These small, practical favours can make the world of difference not only to our energy levels and symptom management but to our stress levels and general wellbeing.
If you’re going out shopping in the car, ask does your friend need anything picking up. If you have any free time during the week, ask do they need a lift to any appointments or offer to accompany them. When you come to visit, have a look around: is there a pile of dishes in the sink? Does the washing need pegging out? Does the recycling bin need emptying? It really can make our lives so much easier when friends and family carry out these small acts of kindness. It makes us feel seen, saves us from using up precious energy and also saves me personally from being buried beneath a mountain of empty cat food tins and empty packets of microwaveable quinoa.
4. Inbox me, hun
Being housebound with a chronic illness can lead to feelings of loneliness and isolation, which in turn can just make your condition all that harder to deal with. You suddenly become cut off from your community – unable to work, meet friends for coffee or dinner. Even talking on the phone takes up more energy than I have most days and it can often feel like you’re starting to disappear. It may sound a bit pathetic but over the last year social media has become my lifeline. Scrolling through twitter or seeing what people are up to on facebookcan help to make you feel like you exist outside of your own four walls. It helps you feel connected and invested in the world around you, even if most of what you’re reading is just depressing tales from Trump Land or What Theresa Ballsedup Next.
If your loved one is unable to get out of the house, keep in touch as much as you possibly can. I can’t stress enough how isolating this illness can be. Even if they aren’t always able to reply straight away or have much chat (again, something that takes a surprising amount of energy), I promise you they will appreciate you getting in touch. Send them articles, memes or interesting podcasts they might enjoy. Help them feel connected to the world outside of their home, beyond their illness. Hearing (or reading) a friend's news or even listening to them talk about a problem they’re having helps you to feel normal, still needed, still you.
*Cheeky little validation plea: I LOVED reading your comments on the first blog post. Some were from people I know, some from total strangers but all of them came from a place of love, support and friendship, and I don’t mind telling you, dear reader, it warmed the cockles of my fatigued little heart. So at the risk of sounding needy, keep 'em coming!*
5. Be flexible
M.E, like many other chronic illnesses, is a fluctuating condition. No two days are ever the same and you literally never know how you’re going to feel from one day to the next, even from one hour to the next some days. Exciting, right?! What fun! I’ll give you a scenario to help explain more clearly: Your friend invites you to their house for brunch in two weeks’ time. Yes, you say, that sounds like something both enjoyable and manageable. See you there, chum! When the date is approaching you are careful to pace all your activities and plan carefully so that you have nothing too taxing in the days leading up to the event. You do everything right. Then you wake up on the day itself and feel like you have the world’s worst hangover, and that also maybe someone ran you over with their car without you noticing. There’s no way you can go out, so you text your friend to cancel. Cue the anxiety!
* Fun fact: one of the ‘predisposers’ of people who get M.E is that we are mostly overly anxious little sods so you can see how needing to frequently cancel plans can really be an issue*
I am lucky that I have lovely, understanding people around me who never make me feel bad if I need to cancel last minute or repeatedly turn them down. If your friend is suffering with this illness, let them know that it’s ok if they need to cancel at the last minute. Your friend really wants to see you, it’s just that their body has other ideas sometimes. It’s important to let them know that there is no limit to your invitations, that you won’t give up on them. The type of activities you do together will inevitably have to change (think less cocktails and dancing, more tea and bed chats) but there are plenty of ways to make activities more adaptable so that they can join in – keeping it short but sweet, choosing a location with soft seating, offering to come to them – little things that can make a massive difference. Even then, they won’t always be able to make it but they will always be so happy and thankful that you asked.
If you made it this far, congratulations! You are now ready to support any and all loved ones with M.E. Hurray! In all seriousness though, thank you for reading. It means a lot to me that you would take the time to read this and be willing to learn. Equally, I’m happy to learn from you too! You’ll find out what works for the people in your life and develop the best tools to help them, but I hope this has been a good starting point if – like me and my family – this is all new territory for you.
As ever, onwards and upwards!
M.E, Myself and I…
If you’re reading this and you’re a relative or a friend you can skip ahead since we can assume you already know me fairly well. If you’re not then hi! I’m Lorna. I’m a 31 year old living in the North West of England with my husband and my cat. Until recently I was all of the following:
Then after three years of increasingly poor health I was diagnosed with M.E in August of last year, and suddenly all of those things I loved were just taken away. Life as I knew it came to a complete halt. It’s funny (in a ‘makes you want to cry’ sort of a way) because obviously I am still a qualified teacher, I still have an interest in or a love of all of the above but when you can no longer partake in them it feels as though they no longer make up the sum of your parts. They become part of the ‘old you’; the pre-illness you. It forces you to re-examine who you are, outside of what you do and there’s a sense of something akin to grief for the loss of your ‘old self’. You suddenly have to re-learn who you are now that all of those identity markers have been taken away. It’s more than a little bit daunting.
Until my diagnosis I had been living in Italy with my husband and working as a teacher; a job that I loved and worked bloody hard to get. I had (still have) a wonderful group of friends in Italy and was really quite happy in the life we had created for ourselves there. We worked hard, we travelled, socialised, enjoyed all the culinary delights that Italy had to offer. But poor health was making it increasingly difficult for me to maintain any semblance of a functional, normal life outside of work. I was barely making it through the working day and started having to spend my evenings and weekends in bed feeling utterly exhausted.
For a long time this was written off (by me and medical professionals) as stress; working in a high pressure job, undertaking my post-grad whilst simultaneously planning a wedding was stressful. But eventually it got to the point where I was in pain daily, had constant flu symptoms and couldn’t even walk up a flight of stairs without needing a rest and I simply couldn’t carry on. After two years of tests, referrals and tears in my GP’s office I eventually, FINALLY got a diagnosis. The relief was immense. At last I had hard proof that I wasn’t just being soft or not coping with the demands of life. I had an actual, medically-certifiable condition. Now I had answers I could finally receive the support and treatment I needed to begin my recovery and return to full health, right?
A year later and I’m still asking that question.
M.E, Myself and Myths!
Before we go any further I felt I should clarify a few things about my condition because I know it is still widely misunderstood. I’ll start by telling you what M.E isn’t:
M.E, Myself and the Medical Stuff...
M.E stands for Myalgic Encephalomyelitis but is also known as Chronic Fatigue Syndrome or CFS. To be completely honest the name CFS grates on me a little because there is so much more to this condition than just the fatigue (plus M.E just sounds fancier doesn’t it). Anyway, M.E (ooh, fancy!) is a systemic neuroimmune condition that affects an estimated 250,000 people in the UK alone. There is currently no known cure. The following is a list of just some of the common symptoms:
That last one isn’t medically proven or anything, but I think a quick glance at my Instagram would be proof enough.