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

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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Lost luggage and lost health….body start behaving now….please?

Lost luggage and lost health. Photo credit mzacha via Morgue File

It’s been a funny week here on planet Jess ME/CFS.

There have been some real highs, namely my sister arriving home from the US for her summer break. Lou arrived safely back at my parents in Lincolnshire on Tuesday. Unfortunately her suitcase was not so lucky, BA managed to leave that in Philadelphia. But all’s well that ends well, 5 days later it arrived by personal courier. It’s lucky that Lou and I are the same dress size, she has been able to raid my wardrobe for clothes in the absence of her own! But it would seem that accepting a free seat upgrade on a flight does not guarantee your luggage is given the same special treatment! I think Lou may stick with cattle class from now on!

On the other hand, there have also been some lows too. I have been utterly exhausted all week. My level of fatigue has been much worse than my usual. The myalgia pain has been really bad, both in my upper body, shoulders, neck and arms but also in my legs, especially in my calves and ankles. The upper body pain is old hat at this point. It’s been my main source of pain since the beginning of this fun ME/CFS ride. But the lower limb pain is relatively new. Or at least the current severity of the leg and ankle pain is new. It would not be an exaggeration to say that this week pretty much every single joint, muscle and tiny crevice of my body has hurt. My ankles feel like they have chains around them which are too tight and are squeezing my ankles so tight it hurts. My calves are heavy, achy and so sore. On Wednesday my upper body hurt so much it was a struggle to keep myself sat upright at the kitchen table. I just wanted to lie down over the table. The dizziness has been bad too. Heaven forbid that I change position, either from sitting to standing, or lying to sitting. Each time I do I experience moments of sheer dizziness and pressure in my head to the extent that I have to grab hold of something, anything, to balance myself. Even getting up off the toilet as evoked this reaction from my stupid body this week.

My ME/CFS addled body is clearly unhappy with me and rebelling at something. And to be honest I’m not entirely sure what the problem is. I acknowledge I did over do it last Sunday when I saw Liz but I don’t that is all that’s at work here. I think there are other gremlins working. I think there must be. I’ve done social things before, bigger and longer things than having lunch and spending the afternoon with one close friend, and not suffered to the same extent as I have this past week. Huh. Highly unimpressed with my body.

So what is going on? I really wish I had a definitive answer to this both for myself and for anyone else in a similar situation. But sadly I don’t. What I do have are a few ideas:

• My period is overdue and I think perhaps that is sucking the life out of me, increasing the fatigue and the pain. I often have a couple of flare up days around my period but not to the extent of this past week.
• Since discovering soluble fibre is an IBS aid, I’ve eaten way more carbs. They have all been gluten free of course but I’ve had bread everyday. And gosh it’s been good! If a ‘normal’ healthy person eats too many carbs, they can suffer fatigue.  I’m thinking the refined flours that make up so many shop bought gluten free bread products are having a fatiguing effect on my body. So out with the carbs! There’s no need for me to be eating so much bread. Carrots, beets, sweet potatoes and bananas can give me the soluble fibre dose my digestion and bowels seem to need to function at anything quicker than OAP tortoise going backwards pace.  I’m going to write a separate post about soluble fibre and update on my diet generally, so watch this space to find out more!
• POTS, POTS, POTS. It is fairly recently that the dizziness, tachycardia and standing intolerance  has gotten so much worse (why? see my previous POTS post). The severity of these symptoms is still new to me and I’m still adjusting to what this means for my ‘normal’.
• Stressing and wondering ‘why do I feel so bad’ just makes things worse. And of course, my mind has been going mad this week thinking and analyzing ‘well what have I done to cause this’. This post is me trying to cleanse my mind of all these thoughts. Write it down to acknowledge it and then forget and move on. Stress and worry exacerbates ME/CFS, we all know that!

As I say I think there is more than one gremlin at work here. I don’t think it’s any one particular thing that has pushed me into this flare. I think it’s the cumulative effect of all these things, and many others, that taken all together has just been too much. My body clearly thinks so, hence the Egypt sized rebellion it is hurling my way at the moment.

Oh well, what’s a girl to do? Rest and rest a little bit more I guess. Lucky for me it’s the Wimbledon Men’s final this afternoon. The perfect excuse to sit with my legs up inside on the sofa when it’s 25°C outside! Come on Murray!

Here’s hoping this week is better ME/CFS wise than last. If only my lost health would turn up like Lou’s suitcase did….Body, are you listening to me? Enough already. Start behaving now, PLEASE….

ME / CFS: be assertive for the sake of your health

Friends. Photo source: Morgue Files user greyerbaby

I’ll return to my hindsight and what if theme in a few days.

Today I want to write about how I manage my ME/CFS on the few occasions I actually see a friend and do something social whilst it’s still fresh in my mind.

I saw one of my oldest and closest friends last weekend. Liz and I met at primary school when we were just 7 years old. Her family still live locally to my parents and so whenever she visits home for a family weekend, we meet up for lunch and have a good old catch up. Being able to see Liz has been one of the best aspects of spending all these months resting and recuperating at my parents.

Having ME/CFS means something as basic as meeting a friend for lunch requires planning and preparation. I hadn’t really left the house, other than for a short walk round the village, for 4 days prior to last Sunday so that I had conserved and banked enough energy for me to enjoy my lunch out without suffering too many nasty ME/CFS consequences.

I spent Sunday morning resting and taking it easy. I did some gentle yoga and then rested. Then showered and got half ready to go out. Then rested again before finishing off getting ready. In short I paced getting ready with several rests (15 – 20 mins each). This meant I wasn’t flagging before I even left the house. I took my dose of soluble fibre and peppermint oil before going out so that my tummy would behave itself for lunch, as I suspected (and did) end up having meat for lunch – boy was it tasty!

We went to a local pub for Sunday lunch, just a few miles from home in the next village. Liz picked me up and drove. Me driving was out of the question as although I would probably have managed driving to the pub, I’d be just too tired to drive home after chatting away for well over an hour. I’m also trying to figure out if it’s even safe for me to drive given how dizzy I am getting these days…

It was so nice to actually have a reason to put on a little make up, wear my hair down and to wear clothes other than my jogging bottoms for once!

After a very delicious roast lunch we went back to mine. I didn’t think I felt that bad when we first got back. I was pleasantly surprised so I didn’t go and have a little rest. We stood around in the kitchen chatting with my Mum for a little while until Mum told me off for standing up for so long and Liz and I went off to sit down in the lounge. I sat with my legs up on the foot stool (the position you can find me most of the time at the moment it seems). Mum was right (Mums are always right aren’t they?!), standing up hadn’t done me any favours and the myalgia and heavy tight pain in my calf muscles and ankles were back.

Chocolate Brownie Joy. Photo by Jess B.

Liz and I continued to chatter away with cups of tea and homemade brownie (gluten free and dairy free of course, recipe coming really soon) – we weren’t being really piggy honest, we’d opted not to have pudding at the pub, so the chocolate brownie rounded off our Sunday lunch really nicely.

As the afternoon went on, I began to feel less and less good. My throat hurt from talking (I’m a bit of chatter box when I get going…) and I was beginning to be really really tired. I was flagging. But I didn’t want the afternoon to end.

I should have gone and had a little rest when we first got home. I’ve done that before with friends, with Liz in fact. I’m not sure why I didn’t this time. I guess I was just so caught up in the niceness of being normal, of seeing my lovely friend, I didn’t want to go and rest and so I didn’t.

With this illness being as invisible as it is, no one really knows how I’m feeling except for myself. This is especially true on the rare occasions that I do wear make up, it’s a great disguise!

I should be more assertive with my ME/CFS. I shouldn’t be afraid of saying, I need to go and rest now. A 15-20 minute rest would have reset and paced my body through the rest of the afternoon.

I shouldn’t put on a mask or a brave face.

In my own little way I would help make this damn illness be more understood and less invisible if I did take rest breaks during social occasions.

Next time, next time I will be assertive. I will say ‘I need to go and have a little rest now’. My close friends (who are the only friends I really see now – but that’s a whole separate post on the effect of chronic illness on friendships) would understand and wouldn’t judge me. They just want what’s best for me and for me to get better. That’s perfectly clear to me sat here right now typing this post. I just mustn’t let myself forget that when with my friends. I mustn’t let myself get swept up and forget that I have a pest called ME/CFS that demands attention whether I like it or not.

If I had been assertive and taken a rest perhaps I wouldn’t have been as tired and achy as I have been for the last few days (tho then again perhaps it wouldn’t have made that much of a difference). Doing anything social is a pretty big spike in activity for me at the moment so it’s to be expected that I’ve not felt that good the last few days following seeing Liz. With the myalgia in my legs and upper body and fatigue worse, my temperature control has gone again, switching from freezing cold to hot flush in a matter of seconds and the dizziness on standing is back with a vengeance too.It felt like every every joint and muscle in my body was hurting yesterday. Even yoga was too much for my poor body. I seemed to have even less strength than normal and changing from one asana to another left me dizzy and in a heap on my mat.

Feeling so bad for a few days following seeing a friend is rubbish. There is no sugar coating it. It is frustrating, upsetting and exhausting. This ‘post-exertion malaise’ is one of the hardest ME/CFS symptoms to deal with. But lets look on the bright side, it’s not all bad, with Wimbledon and Tour de France wall to wall on TV at the moment, it’s been fairly pleasant sat with my legs up on the sofa 🙂 And feeling so bad is worth it when it follows something as nice as seeing a friend.

After Liz left on Sunday afternoon I was quickly back in my jogging bottoms, headphones on listening to a guided meditation, covered with a blanket lying on my futon, I rested. I was more drained than usual as I actually fell asleep, waking up over an hour later, several tracks further down my playlist. But that’s not particularly troublesome, I had done something beyond my usual activity levels. I was bound to be tired.

That’s just the way life is for me at the moment. Spend the vast majority of the time resting and following a very paced routine in order to enable me to go out once in a while. It may sound dull and frustrating, and I’d be lying if I said it wasn’t sometimes. But it’s what my body with ME/CFS needs right now so that’s what I do. The fact I was able to go out at all is a plus. The fact I didn’t feel completely broken when we first got home is another plus.  I live in hope that the longer I rest, pace and be kind to my body, the closer I get to greater energy and fewer ME/CFS symptoms.

How do you cope with social occasions, however big or small?