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Protected: An open letter by top ME/CFS doctors to HHS

26 Sep

Why are ME/CFS sufferers (too tired to think of a more positive word) persecuted like this? Our lives are daily struggles and yet the powers that be don’t seem to be able to grasp that this illness matters in any sense. 250,000 people are estimated to have ME/CFS in the UK. And that’s only counting those actually diagnosed. I suffered for several years before getting finally diagnosed. I am not an anomaly and compared to many my diagnosis came quickly. 25% of sufferers are severely affected, bedridden, tube fed, unable to do anything for themselves; lost dignity and no quality of life. Given ME/CFS is so prevalent and debilitating why is it maligned and side lined? Please reblog and share this post in any way you can. Raising awareness of our situation is vital and the only weapon we have.

Rag and Bone Shop of the Heart

I’m very, very sick with a reemergence of my original symptoms (drenching night sweats, chills, fever, headache, nausea), so I might be gone for a while.

Reposting from Quixotic: My M.E. Blog:

By now everyone in the ME/CFS community (in America anyway) is familiar with the controversy over the U.S. Department of Health and Human Services (HHS) hiring an outside contractor to develop a new definition of ME/CFS. If you’ve somehow missed everything that’s occurred on this front in the past month, here’s the 50 peso version:

HHS announced that they were going to hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria. The leading candidate was a company called the Institute of Medicine (IOM). IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers…

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30 Things You May Not Know About My Invisible Illness

3 Sep
Photo by Jess B.

Smile, My Guiding Light Through My Invisible Illness.Photo by Jess B.

Invisible Illness Week starts on 9th September 2013.

To raise awareness of invisible illnesses everywhere, chronically ill bloggers are completing this meme designed by Lisa Copen founder of Rest Ministries and National Invisible Chronic Illness Awareness Week: 30 things you may not know about their invisible illness.

(As an aside, is it just me who didn’t know what a meme was?! We’ll blame brain fog for that one…For anyone else out there like me who isn’t already in the know (!) a meme is: an idea that is passed from person to person within a culture (thank you Wikipedia for clearing that up for me!)

Here’s my answers to the meme: 30 things you may not know about my invisible illness.

1. The illness I live with is: ME/CFS, POTS and IBS.

2. I was diagnosed with it in the year: ME/CFS 2011, POTS 2013 and IBS 2005

3. But I had symptoms since: 2004

4. The biggest adjustment I’ve had to make is: everything in my life has changed but the biggest adjustment is letting others do things for me and not feeling guilty about it and letting go of control over things and my independence. Oh and stopping doing something before I crash.

5. Most people assume: I obviously don’t feel as bad as I do because I don’t look ill ‘you look well…’ I’m very good at hiding things and getting on with things and make up hides a multitude of sins as they say (not that I have the energy to wear make up very often any more).

6. The hardest part about mornings are: the pain and aching in my muscles and joints, especially lower legs and arms. It’s always worse in the mornings until I get going. Also waking up feeling totally unrefreshed and as tired as you did when you went to bed is pretty hard too.

7. My favorite medical TV show is: I don’t like blood, I’m pretty squeamish so I don’t watch medical shows. My favourite TV show…well that’s tough, West Wing, The Good Wife, Nashville, Parenthood, The Newsroom, at the moment I’m watching and loving Friday Night Lights.

8. A gadget I couldn’t live without is: my iPad, it has all my meditations and yoga podcasts on it. It is also light enough for me hold whilst sat on the sofa so I can surf the net without exacerbating symptoms.

9. The hardest part about nights are: night sweats and not being able to fall asleep.

10. Each day I take 22 pills & vitamins (+ as many painkillers as my pain needs to keep it in the realm of bearable, varies each day)

11. Regarding alternative treatments I: have tried a lot of things: acupuncture, reiki, shiatsu massage, yoga (which I love), meditation (which I love), reflexology, homeopathy, herbal drinks..list goes on.

12. If I had to choose between an invisible illness or visible I would choose: invisible, at least that way I can act ‘normal’ and okay when necessary.

13. Regarding working and career: career is on hold, I haven’t worked full time since December 2010 and I haven’t worked at all since September 2011.

14. People would be surprised to know: going out for just an hour leaves me needing to rest for the rest of the day and suffering a spike in symptoms for several days after. This is the real invisible side of my illness, most people don’t see the preparation (doing as little as possible the day of the outing and the day before) or the after effects.

15. The hardest thing to accept about my new reality has been: people’s misunderstanding and ignorance about ME/CFS, that so many people still see this neurological illness as ‘yuppie flu’ and/or all in the head.. it is a neurological illness as defined by the World Health Organisation, it has been described to be as debilitating as late stage HIV Aids and MS and yet there is still stigma attached to it. We do not have the energy to get through our daily lives never mind deal with the stigma.

16. Something I never thought I could do with my illness that I did was: fly to the USA to visit my sister in Philadelphia which I did this April.

17. The commercials about my illness: we don’t really have commercials about ME/CFS or POTS in the UK. The ones about IBS do not portray any of the gory details.

18. Something I really miss doing since I was diagnosed is: so many things it’s hard to choose but cooking, working and (never thought I’d say this) exercising.

19. It was really hard to have to give up: I should probably say my job, but when I gave it up I knew I had to for the sake of my health, it was just too much and I knew that, so it wasn’t actually that hard to give it up even though I really enjoyed it. Giving up my independence and control over things has been really tough and I still struggle with it – being pushed around a shop in a wheelchair having to explain where and what I want to look at rather than just being able to wander over on my own two feet wherever and whenever I want.

20. A new hobby I have taken up since my diagnosis is: yoga, meditation, blogging all I which I really really love and am grateful to my illness for giving me time and the opportunity to experience and love these things.

21. If I could have one day of feeling normal again I would: cook, bake, cook, I miss being able to play in the kitchen! I’d also go out for dinner and drinks with my boyfriend and family, it would be amazing to do these simple things without the torment of feeling exhausted and pain spiking any second. And yes in case you haven’t guessed I love food! I would also practice yoga (a longer and more energetic practice than my current ‘chronically ill’ usual) and to meditate as I think yoga and meditation have a huge role to play in ‘healthy’ daily life and I wouldn’t and won’t be giving these two up when I am well.

22. My illness has taught me: to take time out to rest and relax, to be calmer, that I love meditation and yoga, to slow down and listen to my body, to be more in the moment, to be less perfectionist and obsessive (still got some work to do here!). My illness has really changed me, changed my outlook on life and changed my priorities. I have learnt so much and I am still learning.

23. Want to know a secret? One thing people say that gets under my skin is: ‘you look so well…’ I know you’re trying to be nice but it makes me feel like you think my pain isn’t as bad it is or that I’m making it all up…..(which I categorically confirm I am not and seriously why would anyone choose to feel like this?)

24. But I love it when people: tell me how strong I am (need to hear it from time to time) and when friends and family send surprise cards and packages in the post, that never fails to make me smile because it’s nice to know they’re thinking of me even if they haven’t seen me in a while.

25. My favorite motto, scripture, quote that gets me through tough times is: ‘what doesn’t kill you makes you stronger, what doesn’t kill you makes a fighter’ (this is my ringtone on my phone)

26. When someone is diagnosed I’d like to tell them: you’re not alone, there’s lots of support out there. And most importantly ME/CFS is a real physical illness, do not hide or feel ashamed about your illness (as I did at the beginning) and that there are loads of things you can do to help manage your symptoms, you just need to be open minded and think outside the box and be patient and that stress plays a huge role in this illness.

27. Something that has surprised me about living with an illness is: how many other people are out there going through exactly the same thing. Blogging has been a wonderful eye opener in this regard. Not so much that it has surprised me but having to use a wheelchair makes me realize just how hard being disabled is in our modern world; pavements are not wide enough or not smooth enough, not nearly enough lifts on London Underground etc etc.

28. The nicest thing someone did for me when I wasn’t feeling well was: there have been so many I’m struggling to choose, friends understanding that I need them to visit me, that the visit can’t be as long as we’d like and that I appreciate their effort, my Mum and Dad giving up so much to look after me over the last few years, my boyfriend for sticking by me and living through this with me, my sister for keeping me supplied with DVDs to watch by sending me surprise Amazon parcels and for being the super strong and capable big sister (despite me being 18 months older, age doesn’t matter in chronic illness) and looking after me whenever we are together.

29. I’m involved with Invisible Illness Week because: I can be so I am. It’s so important to raise awareness.

30. The fact that you read this list makes me feel: appreciated, valued, a little bit more understood.

Thank you for reading. Did my answers surprise you? Did you learn something about invisible illness that you didn’t already know?

ME / CFS: I am what invisible illness looks like.

24 May
I don't Look Sick

Invisible Illness. Photo Source: Chronically Creative

ME / CFS is often dubbed an invisible illness and I think it is a very apt description.

The recent flurry of activity for International ME / CFS Awareness Day on May 12th 2013 (read more about that here) was all about raising awareness of this illness and making the invisible visible, if only for a day.

This got me thinking. How and why is ME / CFS an invisible illness? The answer might seem obvious and simple – there are few, if any, external visible symptoms. But it’s not that simple. I think there are many ways in which ME / CFS is invisible.

I'm hurting on the inside = invisible illness

Image credit: Yahoo Image Search.

Here are just some of those ways which are personal for me:

  • Much of what I go through on a daily basis is not seen by even my closest friends. After I published my recent post listing some of the ways ME / CFS impacts me (e.g. not being able to dry my own hair for it making my arms ache too much), a close friend said to me that she’d had no idea up until reading that post just how hard it must. I was so touched by my friend’s words. It made me realize just how invisible this illness is. Only Mr B, my parents and my sister really see what this illness is like, as they are the ones who see me on a daily basis.
  • There are very few, if any, obvious visible physical external symptoms to ME / CFS. My mum sometimes comments that I’m looking very pale or that I look even more tired than usual, but to the lesser discerning eye, on the outside I look well and people often comment that I do look well.
  • ME / CFS is classified as a neurological illness by the WHO. It is a disease that affects many of the body’s systems and functions: hormonal, nervous, endocrine, gastrointestinal, temperature control to name just some. But we do not grow two heads (!), the symptoms are internal. When I have a night sweat, an awful headache, start to ‘wilt’ from fatigue, ache and have body pain, I’m the only one who knows this. There are no really clear obvious signs on the outside.
  • A diagnosis of ME / CFS is a diagnosis of exclusion. It doesn’t show up in a blood test in its own right. You are tested for everything under the sun (glandular fever, leukemia, tumours, thyroid dysfunction, celiac etc etc) and when these tests are clear, you are diagnosed with this lurking invisible illness of ME / CFS.
  • Those of us with ME / CFS spend the majority of our time inside our homes. Aside from those who live with us, we are not regularly seen by others, not even by our closest friends. We just don’t have the energy to socialize very often. When I have a visit from a good friend, the visit is kept under a couple of hours so that I do not ‘do too much’ and crash too greatly with fatigue and pain. This management of my illness is vital to keep my symptoms in check but also means that even my closest friends do not see what this illness does to me.
  • On the occasions when I do do too much, or even after a paced and managed outing or visit, I suffer from post-exertion malaise (i.e. a spike in symptoms from having done ‘something’) and I will need to spend a few days taking it really easy, letting my body recover from the increased energy used in the outing or visit, however small the energy exertion might have seemed to others. This of course means more time at home, without contact and interaction with many others, again making this illness invisible.
  • I need to have done very little during the day or so prior to a visit or an outing. Spreading out activities in this way helps keep my symptoms in check. But it means ‘doing anything’ more than my normal routine is restricted. Again this self management is not seen by many, keeps me at home and my illness largely invisible.
  • More and more it seems that when I mention to someone new that I have ME / CFS, they respond with ‘my Aunt has that’ or ‘a friend of a friend’ has that. Awareness and knowledge of ME / CFS is growing. But there are still far too many blank stares and ‘what’s that?’ when ME / CFS is mentioned. With this comes misunderstanding or downright ignorance. When Mr B and I were filling out life insurance and critical illness questionnaires for our mortgage, I had to declare my ME / CFS. Our mortgage broker said ‘oh that’s that yuppie flu’ isn’t it. I could have hit her (if I’d had more energy)!! This left me and my illness feeling totally misunderstood, misaligned and invisible.
  • As an ME / CFS sufferer I know I’ve added to the invisibility of my illness. Four months after my initial collapse with suspected ME / CFS, I attempted a return to work on a (very) part time basis (this was a stupid decision and only served to make my symptoms much worse). I didn’t want people to know that I had (suspected at that stage) ME / CFS. I wasn’t comfortable with that label. Everyone’s heard the negative press and stigma that is sometimes associated with this illness. I guess I was ashamed and embarrassed that I had ME / CFS. But by not talking about it I did nothing to help lift this illness from its invisible doldrums.  (That was over two years ago, I am fully comfortable with talking about my ME / CFS now).
I look like invisible illness.

Image credit: unknown source via Pinterest.

In addition to all of the personal ways I find ME / CFS to be invisible, this illness is largely invisible in the public sphere as well:

  • There is very little money and time given for medical research into the causes and possible cures of ME / CFS. Thankfully ME / CFS is not fatal. It is also not a glamorous illness given the stigma and negative connotations the illness (wrongly) gets sometimes. It is a chronic illness with no apparent leads in sight for cures. For all of these reasons and more, the large pharmaceutical companies, that fund so much medical research, and lobby politically for research and funding grants, are not attracted to chronic illnesses such as ME / CFS. 
  • ME / CFS seems to get side lined in the medical training of doctors and nurses which only leads to it remaining misunderstood and invisible in the eyes of many of the medical profession.
  • There is very little media coverage, positive or otherwise, of ME / CFS which simply compounds misunderstanding, ignorance and the invisible nature of chronic illnesses such as ME / CFS.

This has been a whirlwind tour of some of the ways ME / CFS appears to me to be an invisible illness.  It’s not exhaustive by any means.

Can you think of any more ways in which ME / CFS (and other chronic illnesses) are invisible? Let me know!