Getting Better

I have had M.E. for over a quarter of a century.  For the first two years I was moderately affected, unable to work but able to self-care.  Then I developed meningitis on holiday in Kenya and became very severely affected, and on occasions critically ill, for a decade.  I tried every treatment known to man, plus a few no-one had heard of, and nothing much helped.  Eventually I decided I was going to be severely ill for the rest of my life so I had to find peace with that and live my best life despite it.  I stopped searching for a ‘cure’ or any effective treatment, focused on eating as well as I could and embarked on a strict pacing schedule despite being stuck in bed for 99% of the day (more on that in this post).  It’s then I started to see improvement.

Over the next 4 years I went from being bedridden all the time to bedridden for about 80% of the time, and now 10 years later I am up and around for about 7 hours each day.  I have to spend the rest of the time in bed, but for most of that I’m either on my laptop or watching TV – I don’t have to lie down in the dark and quiet like I used to.  It’s nothing short of miraculous the recovery I’ve made.  Once you’ve been severely affected for more than 5 years the chance of any kind of recovery is about 7% and the fact I didn’t do anything specific to bring on my improvement is even rarer.

My life has changed beyond all recognition now I’m back to being moderately affected.  When I was bedridden I used to spend all my ‘active’ time online and was heavily involved in the M.E. community.  I volunteered for a national ME charity and helped run an online support group, but as I started becoming part of the ‘real’ world again I began to resent having to spend so much time in cyberspace.  I wanted to be outside in the fresh air, sitting in cafes reading the paper, weeding my garden, spending time chatting with my family, having lunch with friends and sometimes just driving round the countryside in my car simply because I could – all the stuff I’d missed out on for so long.  Then along came photography, and at the same time both my parents’ health took a huge nosedive and they needed me to care for them, so I no longer had time to be online.  I gave up the volunteer work I’d done for 14 years and completely dropped out of the online ME community, eventually losing touch with almost all of the ME friends I’d had for years.

It wasn’t that I didn’t care any more, but I still had very limited energy.  I’d been forced to spend my time online because I’d had no other choice, but now I had the opportunity to live again I had to take it.  If I’m totally honest, I also didn’t want to talk about being sick any more.  It’s depressing and after 20 years I was all sick-talked out.  My home life had also changed.  When I was bedridden I employed someone for 6 hours each week to help me, but the money I spent on that I now wanted for other things – I bought a car on finance, had lunch out now and again, plus photography gear is ridiculously expensive – so I now had to spend much of my time and limited energy cooking, doing laundry and generally taking care of my home and self.

Although some of my severely ill friends were hugely supportive and genuinely delighted for me, many weren’t.   No-one said anything to my face but I know there was chatter in the ME community about my improvement.  By this stage I’d discovered I also had Ehlers-Danlos Syndrome and there was talk that I probably hadn’t had ME in the first place and my problems were down to hEDS, which isn’t true and was really hurtful particularly as I’d nearly died from ME.  However, I totally understand the resentment and jealousy at my recovery and the anger that I left the ME community behind.  For all the years I was bedridden, every time I heard of someone getting better I would rage that they obviously didn’t have ME to start with and most of the time I was right!  I’m hugely suspicious of people who are diagnosed with ME and who make a full recovery – you have to wonder if they actually had ME in the first place.   I haven’t made a full recovery and without drastic intervention I don’t think full recovery from ME is possible (please God may I not get comments from people who “recovered” by going gluten free or some such shite).  I am still very much affected by M.E..  I have made a degree of improvement but I am still sick and I personally think that without novel intervention (such as the surgery undertaken by Jen Brea whose recovery I celebrate whole heartedly) that’s the case for most of the severely affected patients who see improvement – I don’t know of anyone who has gone from being bedridden for decades to living a normal life again.

Not only did I face resentment and suspicion from some of the ME community, I also faced it from the healthy community.  When I was bedridden I simply never saw anyone.  Now, however, I was amongst ‘normal’ people again but not in a way they understood.  They would see me pruning the roses in my garden in the morning, then using a mobility scooter to walk the dog in the afternoon.  Or they would see me going out in the car at 10am, then the bedroom curtains would be shut at 4 o’clock in the afternoon.  They would see me going out on a Wednesday night to my photo Club, then declining their invitation to bingo on a Friday night because “I’m not well enough to go out in the evenings” – I probably should have added that’s because it took me all week to recover from going to my photo club!  Some of my neighbours have voiced their scepticism of my lifestyle to my face and it’s been hard to deal with, especially when each day is still a monumental struggle during which I don’t feel well or pain free for a single second.

The biggest upside to my recovery has been the effect it’s had on my parents.  They spent years worrying themselves stupid over me, and now they are both sick themselves I’m finally in a position to look after them for a change.  I can’t do anywhere near as much as I’d like to, but I’m there when it counts and I feel I’m paying them back in small part for their care of me during all my very sick years.  The best part has been that they are finally proud of me.  I was a really clever kid and my parents thought I’d become a Vet or a Lawyer, but illness struck and that was the end of that.  I’ll never forget being at one of their big wedding anniversary parties, when my Dad stood up to make a speech – he thanked his sons for giving him his wonderful grandchildren, then it came to me and he didn’t quite know what to say 😦  But my friend overheard him this week talking about me to his hairdresser.  “I’m going to show you something” my Dad told her excitedly, pulling out a wildlife Calendar containing two of my pictures “and she’s had a photo in a gallery in London!  She has letters after her name now y’know” he went on “and she’s won 5 international gold medals so far this year” – he was apparently beaming with pride.

I wake every day grateful for the improvement I’ve seen, but it isn’t exactly how I’d imagined.  I thought recovery would be just that – totally recovery – not some kind of limbo land inbetween sick and well.  It’s no coincidence that most of my closest friends now are elderly because that’s who I seem to share my lifestyle with – being at home all day, struggling on despite health problems and not having the energy to go out in the evenings!  I gave my all to the severe ME community when I was bedridden, but now I have to be selfish and spend my limited energy on doing what makes me happy alongside caring for myself and my home despite ongoing illness.  However I feel like I don’t belong anywhere – I’m not severely ill, but neither am I completely well – and in its own way that’s more isolating than being one or the other.

 

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9 thoughts on “Getting Better

  1. livvy.woodburn@icloud.com

    Dear Jak,
    I really love this post because I can relate to it in lots of ways. I couldn’t collect my thoughts enough to say theses things.. so I appreciate that you do this, I understand it is still very difficult for you too. Thank you ☺️.

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  2. jjlfc7705

    I understand much of what you have been through. I’m still inwardly fuming 15 years later after we couldn’t make it to one of my ‘nephew’s’ wedding receptions. I was ill, very dizzy and in no way safe to drive a car on a 50 mile round trip. The next day the dad bellowed through our closed-curtain windows ‘Don’t look too ill to me’. Didn’t have the courage to knock on our door and say it to my face. How ignorant! Anyway there are many other cases that everyone has like this. It was really fantastic to hear, and for you,to find out how genuinely proud your dad is of you and your photography. I thought that was so lovely. xx

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    1. Jak Post author

      So sorry to hear that happened to you Jill 😦 I think not knowing how you’re going to feel on any given day is one of the hardest aspects of ME to deal with – it makes planning anything impossible x

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  3. Jan Groh

    I never thought I’d encounter professional jealousy, but I think people resenting you for getting better (because they haven’t yet) ranks up there. I’m sorry for anyone who is still fully bed-ridden by ME, whatever it turns out to be.

    And it is exactly this distinction (between chronic fatigue secondary to other issues/diseases) and “true” ME that is where my domain name came from (before I found your blog, even), after I was (mis)- diagnosed with CFIDS back in 1993 at the Harborview Chronic Fatigue clinic in Seattle. I attended one support meeting, and upon hearing how poorly those people were (they slithered in, mostly wheeled in wheelchairs by loving spouses or family, where I walked), and knew I did not have whatever they had.

    Oh sure, I was happy for some kind of medical validation, but I just knew I had something else going on. (This was in my 20’s.) Fast forward to 2012, and my massive onset “cascade” of hEDS symptoms landing me in a wheelchair, and I finally had answers. Oh, That’s Why I’m So Tired! Right? Oh TWIST. (dot com for those interested).

    Toss in MCAS and dysautonomia and yeah, you’re going to have some chronic fatigue, some days better than others. But I am so grateful to not have shared your viral onset and clear neuro-inflammation. I pray daily we continue to find answers, hope and help for the rest of the community. Jen’s story will help some, but not all (there’s now a glut of people asking for cervical spinal fusion, more than there already was just from the EDS community), and I’m still convinced we’re gonna find SOMEthing else to explain the rest or another piece of it.

    My heart does go out to those left behind. You are worthy, and deserve attention and some kind of recovery too, whatever form that takes. I’m sorry it’s taking a lifetime to shine a light on your plight. But people like Jak and Jen are only helping to do that, so maybe cut them some slack?

    BTW I’m typing this in my pj’s at 1 pm on a Saturday. I never got dressed yesterday. But I was able to go out the day before and hope to again later today. That’s just how this goes. (Up and down, semi-randomly.) Whee.

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    1. Jak Post author

      You know your body better than anyone else I agree Jan. Doctors kept saying my pain was just part of ME and I knew it wasn’t! Like you, along came the hEDS diagnosis and a lifetime of symptoms made sense. Ditto MCAS. The chronic fatigue of hEDS is nothing like how ME makes me feel – the symptoms of each illness, while similar, are still very different.

      I’m stuck in bed today too feeling bloody crap, yet I was out gardening 2 days ago! As you say, totally random how you feel each day and I seem to have no control over it.

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  4. Sarah

    I’ve had ME for oooo, 18 years now. Steroids did make a difference but now I’ve been diagnosed with muscle atrophy on top. I’ve just felt each year it’s one thing after another. I explained to my mum that before being so bedridden (90% of the day), I used to be optimistic and think tomorrow may be a “good day” with regards to energy. Being bedridden is soul destroying. There’s only so much you can take. I was just starting to get out of bed more, but I’m like a rag doll and keep falling down. They think it’s steroid induced muscle atrophy. Oh Sod’s Law
    My thing now is I can’t seem to keep things in my right hand, constantly dropping things, and I’m right handed. I’ve had an emotional wobble over this but now I’m thinking I’ll just have to become left handed. I have been using my left hand a lot more for the past few years so it’s do-able (my CBT training kicking in)
    I sometimes think it’s far worse to see improvement and then go backwards
    Actually, I think everyone diagnosed with ME should be offered CBT, not because it’s a mental issue as some dinosaur Drs still think, but because it can help you lose the plot
    I also think you have to be selfish Jak. When I’m around others, I don’t want to talk about how ill I am either. I want to banter with people and have a giggle…..an escape from the illness mentally as my body lets me know I’m ill all the time. Going out for us even for a couple of hours is like people going on holiday for 2 weeks, you don’t want to talk work when you’re on holiday do you
    My friend told me that having ME was like a full time job with overtime and no holidays.
    I’ve also got a come back for the oldies especially regarding the blue badge…..I wish I was as old as you before I needed it!

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    1. Jak Post author

      It is soul destroying Sarah I agree, having one diagnosis after another. Just when you finally get a handle on one thing something else rears its ugly head :-/ x

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