Living Life, Within the Limits of Chronic Illness

Category: ME Awareness Page 2 of 13

Who Am I?

I first became ill with M.E. at 12 years old. I was severely ill for 3 years before experiencing about 2 years of recovery. Aged 18 I suffered relapse after relapse; every time I saw some progress back to how ‘well’ I’d become in those previous 2 years something would set me back. And things spiralled with a massive relapse aged 20.

In a way I don’t feel like I’ve had a chance to find out who I am. Pre-illness I was an energetic school kid who’d just started secondary school, for the first time I wasn’t the subject of school bullies, I enjoyed learning, had found I really liked basketball, always had my head stuck in a book and was walking the 20 minute walk to school and back each day.

During my teenage years I struggled to complete my education, I was urged to do 5 GCSEs but despite my best efforts this wasn’t possible and I had to reduce it first to the 3 core subjects, then to just English, and finally to just English Language. The workload was just too much, taking all my energy.

In that time I never lost my love of books though. I may not have been able to read much and the little I did do tended to be for my GCSE studies but it was a part of the old me which had survived this illness.

But because all my energy was taken up with studying I never experienced the ‘normal’ teenage things. To this day there is so much I’ve never done and I can’t help but wonder if perhaps this has shaped who I am today.

I’m still a bookworm when I’m able to read a book. I still love learning. I enjoy crafts of all kinds. Yet that is about all I can say about myself. I’m always finding the positives in things and the humour in the situation I find myself in.

It seems in a way nothing has really changed since I was 12, I still love all the things I can still do that I did back then. The rest has been shaped by being poorly.  Life itself hasn’t really changed for me since I was 12; I’m still living with my parents, still require them to help me a lot more than they would a healthy person my age, still enjoy kids films (sometimes they are the only kind of film I can concentrate enough on to follow the plot), still want a hug when feeling really poorly.

Sometimes I can’t help but wonder what I would be like if I hadn’t fallen ill, would I have done all the things I dreamed of doing? Achieved all the things I wanted to do? I still grieve for all the experiences I’ve missed out on, the time I’ll never get back. And I question who I really am, because there are times when I feel that I’m not much more than my illness, simply because it limits almost every aspect of my life in some way. And it takes all I’ve got in me to try and be all the things I want to be.

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A House of Cards

Having M.E. can be thought of as similar to being a house of cards. You know how as a kid (no matter how big or small!) you’d find entertainment from a pack of playing cards, balancing them against each other in triangles and building it up layer upon layer? I don’t suppose kids do that any more and I’m probably just showing my age, but still.

You spend time slowly, painstakingly carefully putting these cards together to form a ‘house’, but the slightest breeze can cause it to collapse. You then set about picking up the cards and start putting them back together, building it up again. Hoping you will get nearer to the top of the card house this time round.  The bigger you aim, the harder it is to achieve.

With M.E. you spend time slowly, painstakingly building your life back together; managing your symptoms and balancing rest and activity. But it just takes the slightest knock (a virus, stress, sleep deprivation etc.) and it collapses around you. So you have to pick up the pieces and start putting your life back together, building your activity level up again, ever so slowly and carefully. Hoping you will get beyond the point you did last time and be able to do that little bit more, for a little bit longer, possibly even recover.

Not every knock takes you back to where you started; some are like one level of a house of cards coming down, while the foundation layer, or more even, remain. Other knocks lead to a more substantial collapse of the house.

Living well with M.E. is a balancing act of rest and activity in order to keep your health the best it can be, and like a house of cards, it is nigh on impossible to reach the top and stay there unless conditions (atmosphere, environment etc.) are perfect.


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13 Years with ME

I can’t believe today marks 13 years since I got diagnosed. Yes it is May 13th and my 13th ME-versary! A day of mixed emotions remembering the feeling of relief that day 13 years ago at finally getting a diagnosis, of someone saying they know what’s wrong. Then as the years have passed I’ve realised that actually no one truly knows what is wrong with me; if they did there’d be more support, a treatment and maybe even a cure.

On that front everything this year seems to be going at a fast pace, not just in terms of how fast the year is going (how is it May already?!) but also my referral to the CFS Clinic, made at the beginning of March & first appointment was the end of April! Super speedy. And now I have a further two appointments already made. This is the first form of support I’ve had, other than a GP, in 9 years.

The first CFS Clinic appointment went well & gave me cause to be optimistic; they actually listened to me! Since having a diagnosis of ME so many doctors have just brushed aside my concerns about new symptoms as ‘just being ME’ and left me to manage things on my own. I’ve lost count of the number of times I’ve left a doctor’s office on the verge of tears, despondent at the lack of support. I know there’s not much they can do for ME, but a bit of support goes a long way. This was the first time in a long while I left the office of a medical professional feeling optimistic.

I’ve had to have another blood test, in addition to the one I had back in March. This time I didn’t faint mid-test though, my body waited until afterwards! Maybe that’s progress!

I don’t know if any of this will lead to anything, but right now knowing there’s someone there who will listen to me at these appointments and offer support is help enough. It’s hard to explain but having had almost nothing in the way of support (medically) for the past nine years, virtually anything the clinic offers is better than what I’ve previously had – the starting bar is already mightily low.

It’s also come at a time when my health has deteriorated, this blog post has taken me days to write because I can’t type, or even think clearly enough to put a sentence together for very long. It’s been written literally a paragraph at a time over almost two weeks. My legs frequently feel like they’re going to give way beneath me, and my arms aren’t much better when I try holding onto things for support. The pain levels have increased, as has sensitivity to noise and light – ear plugs & sunglasses are my best friends! I can’t manage much activity each day and require help with simple tasks again. It’s taking time to get used to, to adjust to a further reduced level of independence.

I’m not expecting a miracle treatment or cure but having some support is wonderful! Here’s hoping this time next year, maybe, just perhaps, things might be a little easier than they are right now.

But this anniversary isn’t all about focusing on the continued lack of understanding, support and treatment, it is also about celebrating the person I’ve become as a result of having this illness. Through the years I have found I am stronger and braver than I ever thought possible, I have survived bouts of such poor health looking back I’m amazed at how positive I managed to remain. That’s not to say I don’t have my moments of feeling sad & frustrated about all that I’ve missed out on, am unable to do and how uncertain my future looks. But for the most part I remain positive and try to achieve things despite the limitations this illness imposes. The biggest of those during the last 13 years has been my degree; possibly the most challenging thing I’ve taken on in life if you don’t include the challenge that being chronically ill presents!

So today there shall be cake & smiles even though I’ve been ill 13 years and it seems I’m no closer to recovering. I will make the most of what I can do and enjoy that.

Besides my wonderful friend over at the-slowlane-me is hosting a Blue Sunday tea party, and so cake is definitely a must, I may not be able to join in personally but I’m there virtually! If you want to support her in raising money for the ME Association then please join in, details can be found here:

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A Day in My Life… May 12th 2018

It’s that time of the year again: ME Awareness Day. I haven’t managed half of the awareness raising things I usually do; I’ve been having to take it easy following a lot of appointments & there’s more coming up.

As has become tradition I’m writing about a day in my life with ME, describing how I am and what I can do on an average day.

So here goes….

“I wake around 8:15am and lie there slowly moving my joints, stretching, assessing the pain levels. I slowly attempt to push myself up into a sitting position; this often takes a few attempts as my arms collapse under me as I try and push myself up. Once in a sitting position I move my legs round so I’m sitting on the edge of my bed and there I stay for a few minutes while my body adjusts to being upright. If I attempt to stand too quickly I get very dizzy & feel faint. I make my way to the stairs, usually leaning on the door frames and walls on the way, before beginning the slow trek down the stairs, often on my bottom; bum shuffling as it feels safer than trying to walk down them.

Once downstairs I use the bathroom before sitting on the sofa, propped up on pillows with my feet up, resting for at least 15 minutes before attempting to get my breakfast. I get breakfast while sitting on a perching stool, having assistance with lifting and opening bottles of squash and milk etc. Before returning to the sofa, with my breakfast, usually carried by one of my parents, where I eat it before taking my pills.

I rest for a while after breakfast before climbing the stairs very slowly to get some clothes; I sit on the edge of my bed getting my clothes out of my wardrobe and chest of drawers (the perks of having a tiny bedroom!) before slowly making my way down the stairs again.

I have another short rest before I head to the bathroom to get dressed, I sit on the top of the closed toilet seat to do this and either use a helping hand or have one of my parents help me with dressing my bottom half. Whatever happens socks get left until I’m back on the sofa!

I have another short rest, then it’s usually half past ten, if not eleven o’clock – boy does time fly by when you have to do things slowly, punctuated by resting! – so I make a start on doing something, usually replying to a message from a friend, knitting or catching up on a TV show I’ve missed. Whatever it is, my concentration vanishes after 20 minutes and I can’t knit for long because it hurts both my arms and hands.

Another rest follows, before lunch. This is often made for me by one of my parents now, and brought to me to eat on the sofa. It takes me a while to eat and I require yet another rest afterwards as even just eating & digesting food takes energy.

The afternoons are often spent outside on my garden sofa in the dry warmer weather, laying there with my sunglasses on (and earplugs in if it is noisy), on colder or wetter days it’s the sofa inside that has the pleasure of me laying on it! I might read if it’s quiet, watch a little TV or just lay there quietly chatting to my family.

I have another rest mid-afternoon, before I get one of my parents to help me into my pyjamas. Then I curl up in a comfy chair (feet up) and watch my Dad cook dinner, often chatting to him as he does so.

I return to the sofa where dinner is served to me on a lap tray – since spilling my dinner all over both myself and the sofa a few weeks ago I am no longer allowed to hold a full plate!

After dinner I often just lay on the sofa listening to the conversation going on around me. Depending on how fatigued I am, I might well be wearing my sunglasses and possibly even have an ear plug in order to cope with that.

Come 10pm I head to the bathroom to get ready for bed, my legs often trembling underneath me as I do so. I have to sit down to do my teeth before making my way back to the living room where I take my final lot of painkillers of the day. My Dad helps me get up the stairs, ready to support me if my legs do decide to completely give way underneath me. It’s an incredibly slow trek as by this time my legs are shaking constantly under my weight.

I get into bed, write in my journal, turn down the light & wait for sleep to claim me; by some miracle that is usually by 11pm! “

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I think I can handle with no negative effects on my health. Anything more and I pay the next day. (a recent deterioration means I’m not 100% sure this is accurate right now – it might be slightly less activity to have no negative effects).

Looking back on last year’s post it’s disappointing to see things have deteriorated again and things are that bit more difficult again. I did know things had become worse of late but I hadn’t realised just how drastically things had changed in the past year. Life goes on though & I remain positive.

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

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