The Pain(liness) of the Long Distance CFS/ME(er)

Hi Teamarinos

I’ve been thinking a lot about what my next post’s topic should be on, seeing as the list I made seems to have been superseded by me talking about actual events and issues as they arise. So I think today, I’d like to talk a little about pain. Emotional, for sure, but mainly physical pain.

Every year around this time, as the first nice few days of summer arrive, I tend to go into a bit of a downward spiral mood wise. This is for totally self-pitying reasons and I get mad at myself for it but try as I might to be a better person and stay positive, I just can’t. I mope and I wallow and am generally pretty awful to live with.

“Oh why?” I hear you ask, “We hadn’t noticed!” and “Not you, oh paragon of virtue!” I hear you say… sarcastically. Well I’ll tell ya! But first let me say, I’m kind of getting over it for now so as usual please don’t pity me.

I also want to say that it’s been made worse this year, by all the politics flaring up around CFS/ME, again in the medical profession and all the turmoil and anger caused by the things I’ve been posting about recently.

There is nothing more stressful for any human being than feeling like you have no control over your life or the things that are happening to you or around you. That stress reaction happens in everyone and that is normal. It is why I am a big believer in taking responsibility for myself and trying to take back my own power whenever possible. I guess it’s kind of one of the reasons I wanted to start this blog, if I want awareness raised and attitudes changed, I cannot sit around waiting for someone else to do it.

The problem for me is that a seemingly normal stress reaction with all that cortisol racing through my body, makes my symptoms so very much worse, especially the fatigue and musculoskeletal pain.

So why do I get pissed off at the start of summer? Well, I’ve mentioned it before. It’s loss. It’s like the anniversary of someone dying, in this case, the former me. Summer is the anniversary of my death and I grieve for myself. So pathetic.

I look outside at people enjoying their own physicality, bicycles, picnics, walks, days out to safari parks and the like and I become like a child; jealous, lacking in control and stressed. Every year I try not to do it and every year, I do it anyway.

A lot of the time I purposefully forget or ignore my larger situation and just how much I have lost, in terms of physical ability and that suits me. It works well for helping me live in the now. I try not to think about the past or the future because one makes me feel sorry for myself and the other makes me scared.

The Dalai Lama said, when asked what surprised him about humanity, “man sacrifices his health to make money. Then he sacrifices money to recuperate his health (this is the bit I am at obvi). And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future. He lives as though he is never going to die and then dies having never really lived”. Well I can’t really live as much as I’d like, as such, but I do try to be present as much as possible.

However, at the start of the summer I. Just. Can’t. Do. It.

I’m Nike in reverse.

I was talking to Mr M.E. yesterday morning about how we used to walk the Edinburgh 10k circuit (from Meadow Walk, down through the Grassmarket, round the Crags and back up to the Meadows) on many a Saturday, in terrible windy, cold weather. Stopping only for hot coffee at Starbucks near the bottom of the Royal Mile.

In the summer, we used to walk most of the way home from work together on nice days, another five mile jaunt. We’d be relaxed and refreshed as we walked away the stresses of the day, holding hands like a couple of lovestruck teenagers.

We used to stroll along the beautiful Water of Leith from Slateford to Balerno on other weekends, when we fancied a change, that’s eight miles. And we also used to often pack a picnic and the Scotsman cryptic crossword to hike from Bonaly to Flotterstone and back through the reservoirs – that’s somewhere around a ten mile round trip.

On the weekends when Mr M.E. was working or doing something else, I used to get up and go to the gym in town and that was as well as going at lunch time during the week. Cardio, weights, rowing, stair machine, I did it all. I rowed at home too, I used to stick in my earphones and listen to techno beats. Singing “You can lick my lollipop” at the top of voice, for all the neighbours to hear and wonder what the hell was going on. My distance was 12km and I got down to doing it in 53mins.

My point being, although I was always heavier than most, I was also very active, strong and outdoorsy. I loved the outside so much that when Mr M.E. and I first talked about getting married I suggested that we make everyone buy wellies and get permission to “do it up the hills”. Being outside made me feel free and instantly relaxed

Now I can’t do any of those things and I have no control over it.

Many people don’t realise that the majority of CFS/ME sufferers are in physical pain a lot. I know I am. I am in various states of physical pain almost all of the time. I told one of my closest friends recently that I have to take pain medication pretty much every day and she seemed surprised. So I guess it’s not something I go on about much and hence it’s a good topic for here.

My next point being, it is this physical pain that stops me doing the things I love just as much, if not more than the post exertional payback fatigue that I have afterward.

When it first started it was headaches. The headaches were blinding and nauseating. Like a vice from temple to temple, as though wearing a pair of headphones made ten sizes too small. Sometimes they would just be down one side of my face and behind my eye, like the one I had on the way home from my sister’s the other week. As the headaches eased off they were replaced by other bodily pains. My back would just ache so badly, it would keep me awake. So, we changed our mattress and took up yoga, nothing helped me but Mr M.E. got total ripped from doing the yoga. I gave up after about a year but he still does it regularly.

Then I noticed random stabbing pains. In my face, in my arms and hands. Sharp and sudden, almost like electric shocks, they’d make me jump and steal my breath! As time went on when we walked or hiked, the pain would start relatively quickly building up in my ankles and knees. At the end of the 5 or 8 miles, I would be pretty much hobbling. My feet on fire and sharp pains shooting up through my legs. We would get home and I would completely seize up from the waist down, like an old lady, so stiff and sore. Also I would sit down and promptly fall asleep. I swear to god, before we had my diagnosis, we joked that I was narcoleptic…. But I want to stay on track re the pain because I was never really bothered about falling asleep post exercise, I’m sure that happens to lots of people as they get older (I was only in my 30s though).

Over time my pain evolved again. Now, once my ankles and knees have started, which is usually only around 10 or 20 minutes into any activity that has me on my feet, including even just standing making dinner or trying to do a bit of ironing, it soon spreads upwards to my hips. Then through my back, shoulders and neck. So much so that I can no longer do most of my own housework, never mind go for walks or to the gym.

So, here’s where I’m going to ask you guys to spread the word. People say hurtful things and they need to understand that those of us with CFS/ME cannot exercise like other people. It is not helpful to suggest we should get some fresh air and improve our fitness. In fact, over activity can land the worst of us in hospital. Thank jebus and the magic man in the sky that I’m not in that bracket! My point being, our bodies/brains/pain receptors do not process activity and exercise like ‘normal’ ones. I know it is counterintuitive, because exercise can help all manner of illnesses but CFS/ME is just not one of them.

Back to my direct experience to finish off; I can keep the place tidy and do bits and bobs but Mr M.E. pays for the lovely Lorraine to come for three hours a week to do the ‘hard’ work like the bathroom and the hoovering and the ironing. If we did not have Lorraine, I wouldn’t be able to keep on top of it consistently. Like everything, I’d be able to do it some days but not others. We get no help with this from a social care point of view by the way, we are just very lucky that we can afford it because most people in my position can’t.

Again, I count my lucky stars in this respect because Mr M.E. saw the toll it was taking and the guilt and he said “make it so, number two!” So I hired someone and that was that. There have been times, I might add, when Lorraine has been a complete lifeline. The only person that I may have spoken to from the outside in any given week. She has been thanked in Grey Goose. 😊

Every day, when I first get up, apart from the mind-numbing fatigue and nausea, it takes me a few steps to get moving. I am stiff and sore. During the day, I pretty much ignore my discomfort and stiffness, which mounts as the day goes on. I clean the chinchi’s cage and combine it with some gentle stretching in the late afternoon but when it comes to the evening I have to take painkillers to keep me semi mobile and to ensure that I can sleep.

If I lie down in my bed without having taken anything, I become aware of every ache, pain and stiff soreness in my body and the neuropathic pains start running down my arms, through my wrists and out the tips of my fingers. I have in the past tried to explain it like this “it’s like my actual bones are aching, I’d like to peel back the skin and muscle and massage them and my bones from the inside out”. And in case you are wondering, yes, I am in pain now. It’s much harder to ignore it when I’m actively thinking about it so I can write this and describe what it’s like!

That is why, if you ever see me at a social event, I don’t dance like I used and drink more than I should. I need the pain relief to get through it. It’s not big and clever and it’s definitely not pretty but if I didn’t I’d be going home after the first half an hour. It is also why I get pissed off at the start of summer.


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