Tips from too many years sick with ME / CFS

3 Jun
The Window Seat William Orpen

The Window Seat William Orpen

Recently I came across an article by Toni Bernhard, a chronic illness sufferer turned blogger and author that I totally related to.

The article, 12 Tips from 12 Years Sick, details Toni’s top 12 tips for dealing with chronic illness from her experience of having been chronically sick for 12 years. Some of the tips are practical in nature such as #7: the internet is a rich resource. Others are more of an emotional bent #5: friendships can be affected by illness, and others touch on psychological matters, for example #1: expect to keep on grieving.

As I say I really related to this article as a whole. But these three tips particularly stood out for me:

#2 Try not to ruminate about what others might be thinking about you

I am a chronic worrier about what others think of me. ‘Might’ is a key word in this tip because of course I have no idea what people are thinking inside their own heads! ME/CFS is often such a misunderstood illness and this only adds to the ruminating. But it takes up precious energy and is fruitless so I really need to take this tip to heart.

#4 You can be working even if you are not in the official workforce

This is something I really need to remember to boost my self-esteem and self -worth. Yes I may not be working as the lawyer I trained to be but I am still working. Writing this blog is my work now. It occupies my time and stretches me both intellectually and emotionally. I have a purpose and a value even though I’m not going out to work each morning and instead can do my ‘new work’ in my PJs sat up in bed if I need to!

#8 Don’t be swayed by others’ advice

ME/CFS is one of those things for which everyone seems to have a suggestion or recommendation . This is especially pertinent give there is no one (or any for that matter) accepted cure or treatment pathway. Mainstream medicine has not yet found an answer. ME/CFS symptoms and severity can vary greatly from patient to patient meaning different sufferers respond differently to different treatments. This means what works for one person may not work for me. I can become quite obsessive when someone recommends something to me; feeling I must follow and try the recommendation, and do it immediately. I am so desperate to get well I will consider trying anything. But that can lead to me feeling utterly overwhelmed and daunted. And if I did follow every recommendation I would be completely broke and even more exhausted, from the sheer effort of trying everything, than I was before I started. So I really need to learn to trust my own instinct, my doctors and the treatment path that I’m currently taking.

This is just a snapshot, and my interpretation, of the article and I urge you to go and read the whole thing.

I fell sick in December 2010. This was the point when I was forced to give up work as I knew it then. Taking 12 tips from 12 years sick as my inspiration, here are my 3 tips from my 3 years sick:

1. Listen to your body

This was one of the first lessons I learnt from being sick. I really learnt this the hard way. Before my total collapse with an awful virus in December 2010 I had ignored so many of the warning signs my body had been giving me. It had literally been screaming at me for months, if not years, and somehow I still managed to ignore it. I remember nights leaving work and walking to the bus stop feeling as if my legs weren’t attached to me; as if my legs couldn’t hold me up. My periods had been completely erratic, nearly non-existent, for months even though I was on the Pill which previously had always regulated them. In 2009 I had two awful awful bouts of Flu in the space of 5 months. I’d had digestive issues and food intolerances since I was at University. Each summer after Law school exams were over my body seemed to collapse. I hurt all over and had no energy. Each time it improved after a few weeks so I ignored it. How silly was I. I was constantly exhausted and more tired than my peers. I was stressed, wired and pretty manic (that’s putting it nicely). And yet somehow I ignored all this, and so much more, and didn’t listen to my body. I learnt this lesson the hard way as I didn’t stop before it was too late. One morning I could barely walk to the bus stop I felt so ill and then I did turn round and go home finally listening to my body (but only with my mum urging me on via a phone call). And here I am 2 years and 6 months later, still sick with ME / CFS.

I still don’t always manage to listen to my body as attentively as I should. I still over-do things and suffer spikes in fatigue and myalgia pain. But I’m much much MUCH better at listening to my body than I ever was before. I have to be, otherwise my ME / CFS would be even worse than it is.

2. Give yourself a daily purpose and structure

I guess this is strictly two tips wrapped up as one. Before I started blogging there wasn’t a real purpose to my days. I’ve been unable to work at all for 18 months. My job was my stability, my purpose, my reason for getting up each day. When I was signed off work, the only thing I was striving for and ‘working’ towards was recovery. Given this is rather elusive and can take years with ME/CFS, I was constantly disheartened. Having watched me struggle in this way, my Dad suggested I start a blog to share my experience of ME/CFS with others. My blog has become my purpose. It is my creative outlet, and my work so to speak. It gives me something easily measurable to fill my days. I can see what I have achieved each day with the posts I write. Blogging and writing isn’t for everyone, perhaps it isn’t for you. But I’m sure there is something else that can serve as your purpose, knitting, painting, music, sewing, anything creative, whatever it might be.

My purpose forms part of my daily structure, of my daily routine. I blog for 20 minutes (at current paced levels) first thing after breakfast, then again after I’ve had a rest and done some yoga and for a further session in the afternoon. This structures my day. Put in meal times, all the regular rests I need, the yoga and a daily walk, and you have my daily routine. Having a routine has been so important, it literally keeps me going. It means I don’t laze in bed all day or watch day time TV (I did that for the first 6 months or so, it was literally all I could do) which invariably ends up with me feeling very down, bored and miserable. So my tip would be, if you’re not working, once you’re strong enough instigate a rough daily routine and try and have a daily purpose or project, something that you can do and feel good about.

3. It is OK to wallow (sometimes)

Chronic illness is horrible. It’s boring, painful, all consuming, lonely, isolating, seemingly never ending, demoralizing, depressing and so many more negative things besides. Sometimes it is important to acknowledge the crumbiness of your situation. The advice is always to ‘stay positive’ and ‘keep smiling’ and yes I totally agree. It is not good nor healthy to focus on the bleakness of your situation all the time. That will not help your recovery. But every so often, on my darkest days, I fully admit that I get upset and I wallow in how bad everything seems. Case in point: if you’re a regular reader of my blog you may have noticed recently I’ve not been quite as chirpy as normal! And sometimes that’s ok. Somehow it helps ground me and once I’ve let the bleakness out I can (so far at leasst) pick myself up and begin to smile again.

I’m ‘only’ in my third year of being sick, so following Toni Bernhard‘s lead, three tips is my limit for now. But I’m going to give you one more: NEVER, EVER, GIVE UP HOPE.

What are your tips from chronic illness, or from life generally? Please share!

8 Responses to “Tips from too many years sick with ME / CFS”

  1. Lindsay June 4, 2013 at 1:00 am #

    i love your #3. somedays i feel like i’m surrounded by people who want to remind me that i’m lucky that i’m not homeless, that i’m not dying, that i should just remain positive. and, i agree…i am fortunate that my life isn’t awful. but, somedays i think it should be okay to get a little down and to mourn the lives we used to have.

    • myjourneythrume June 4, 2013 at 8:35 am #

      I totally agree, even though there are worse situations than ours, ours aren’t exactly rosy and sometimes we should be allowed to be down too. Sometimes I think we need to let the sadness out so I think it’s healthy to be down sometimes.

    • julie brownlow hopson June 4, 2013 at 11:30 pm #

      Ditto on #3. I have been ill since 2009-lost job, home, insurance, etc. My youngest son and I were homeless in 2011-it was beyond anything I can describe-never one place to stay, problem solving every single day, endless troubles-heat or cold, broke, hungry, lonely…AND sick! Had place for 2012, altho still beg and borrow for less than basics…and now, homeless again-except got APPROVED just days ago for Disability. Still homeless, but waiting for $ to come….still will be poverty level, but hope we can find low income apt. And, find peace and recover from the mental and emotional suffering…ppl can be so cold and uncaring…so yes…we all deserve time to wallow…

      • myjourneythrume June 6, 2013 at 9:16 pm #

        I’m so sorry to hear how hard things have been for you but pleased to hear about your disability support recently coming through. I really hope that is a sign of things to come and things start to gradually improve for you. Sending you lots of support.

  2. Dee Hudson June 5, 2013 at 6:13 am #

    Thank you for the article. It is an honest and respectful view of illness that few can understand.

    his year is 19 years of disability for me, a full one-third of my life. I am now 57, disabled since age 38 when I had surgery and suffered complications.

    As to ppl telling you it can be worse, I quickly became sick of anyone dismissing and diminishing my personal feelings about being ill. It is not comforting or healthy to dismiss ourselves as it is for someone to tell us to cheer up. We don’t have to wallow in self pity but to acknowledge limitations so we’re not pushing and overdoing. It is something I still work at, all these years later.

    Also the awful implied message from ppl that don’t understand, that I could be doing better but for whatever reason I choose not to do better for myself or my family. I could clean house better, I could cook better meals, etc, etc. Being judged harshly does not help and causes resentment.

    I still need to grieve as I learned recently after having to have my gall bladder removed. I hoped my health would improve much more than it did and it has been disappointing. On one level, I know the horrid gall bladder pain would be gone but I also hoped to be doing better than when the gall bladder symptoms masked other health issues or made them seem worse. Although I was discussing it w. my husband, I had my hopes up that it was somehow going to make a bigger difference in how I feel.

    The trauma of surgical complications caused Fibromyalgia and related issues. The past 9 years adds heart failure, low thyroid, degenerative arthritis in the spine. The gall bladder pain being gone, the arthritis is not as painful as I’d been experiencing esp the past year. The inflammation inside my body pressing on the joints ratcheted up the daily pain in the hips to 8 and sometimes 9. That is a big plus and I am thrilled pain is back to 5-6. I had hoped I’d feel less fatigued and it’s been only a small improvement, which puts me at grief again.

    • myjourneythrume June 6, 2013 at 9:19 pm #

      That is great that your pain has improved and that you can recognize the joy of that. I’ve found even a slight improvement is a big lift with this illness. Though hoping for bigger and more progress and then being disappointed is something i’m very guilty of/ susceptible to. Grief is natural and necessary part of life especially with chronic illness. Sending you lots of support.

  3. E. Milo June 11, 2013 at 9:52 pm #

    Oh, I keep meaning to give you credit for my last post! Thanks for the inspiration!

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