2. Eastbourne, West Sussex
2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers
2. Eastbourne, West Sussex
2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers
Some of you may know I have Myalgic Encephalomyelitis, or ME/CFS. Many of you will have no idea of what that actually means beyond “being tired” which is so far from the truth. For too long the medical profession & the media have treated ME/CFS as a joke, a mental illness, or fakery. It is none of the above, and the mindset is insulting to every single one of us.
It affects waking & sleeping. It affects cognitive thinking and speech, memory, writing and listening. It causes seizures and myoclonic jerks. Clumsiness. Bowel problems. Joint pain. Muscle pain. Exercise intolerance and PEM (Post Exertional Malaise) which can last for weeks or months. Flu like symptoms. It affects every minute of waking life every single day.
In the face of ignorance and incompetence from those with whom she sought help, Jen did what many of us do. She went online and found a tribe. Somewhere where we are heard, seen and understood. Where we are validated.
She then went much further, eventually creating and filming Unrest. This is her story, but it’s also our story. Thankfully I’ve never been as severe as Jen, I pray I never am.
But I have periods of days when I am invisible, when no-one sees me. I don’t get dressed or leave the house. When I wake from an 18 hour sleep then have a three hour nap. When holding a conversation is impossible. When simply sitting up is just too hard, let alone leaving the bed or sofa. I am too often one of the #millionsmissing
Please watch #Unrest – it’s now on Netflix. The link to the trailer is below. Yes it’s hard viewing. But it will open your eyes to the reality of the lives of millions with ME.
Having just started to come out of a bad incidence of PEM I realised it’s something I’ve not specifically posted about. Yet it’s been a huge part of my life for over three years. So I’m going to try to explain in personal terms just how incredibly debilitating it is. A little background is probably necessary.
According to the NIH* “Post-Exertional Malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS).”
A cardinal symptom is one that must be experienced by the patient to confirm diagnosis of the condition, in this case ME. Although my official diagnosis of ME wasn’t confirmed until about eighteen months ago, my GP and I are both in agreement that this has been ongoing for me since the time of my original RA diagnosis.
So, what exactly is it? And how does it differ from the fatigue experienced by patients with RA or other autoimmune conditions?
The NIH* states that “Unlike generalized fatigue, PEM is much more profound and reduces daily functioning. This symptom is characterized by a delay in the recovery of muscle strength after exertion, so it can cause patients to be bedridden for multiple consecutive days.”
And this is exactly what I’ve just been through. More recent studies into PEM recognise that the earlier criteria of ‘exercise’ was misleading and led to confusion amongst patients affecting diagnosis, ‘exertion’ is now used to provide a clearer picture, and it’s recognised that this can be mental or physical exertion, and that the physical exertion has a much lower baseline than in the standard population, as patients with ME are rarely able to exercise.
So we know PEM is profound and reduces daily functioning. But what does that look like? And how does it feel in real patient terms?
The NIH* describes it as “a worsening of ME/CFS, ME and CFS symptoms including fatigue, headaches, muscle aches, cognitive deficits, insomnia, and swollen lymph nodes. It can occur after even the simplest everyday tasks, such as walking, showering, or having a conversation.”
Seriously? Showering? Having a conversation? Actually yes, and in my experience having conversations, chatting, talking, call it what you will is incredibly draining. That doesn’t mean it can’t be enjoyed, but it does mean I’ll often pay for it later.
I’ll try and describe as clearly as I can how I was affected this weekend. I came home Sunday evening from visiting my Dad, which involves more driving than I would usually do. I want to make it clear here that I’m not blaming you Dad!! ❤️ Going to Waitrose or even popping out for lunch can have exactly the same effect. That’s the point. It doesn’t take much. And it doesn’t have to be physical. Dealing with simple paperwork for a short time can do the same thing.
So, Sunday afternoon. The first sign for me is usually yawning. Before I had ME I never thought of yawning as being a physical thing, but this can drop me to my knees. It’s like my whole body yawns with me. A couple of friends in my regular social circle will spot this a mile off now, and they’ll simply say ‘time to go home’. Apparently I suddenly look exhausted. Always attractive!
I’d say that on average within twenty minutes of this yawning starting I’ll be asleep, there is no choice, no putting it off. It’s like my whole body is simply shutting down. My head stops thinking, my muscles go heavy, and I can barely walk.
I lay down on the sofa at about six pm on Sunday, and only came to properly at about 6am this morning. So that’s 36 hours of basically being unconscious. I know I woke twice when my alarms went off to take my meds, and I know there was a third alarm I ignored so I missed a dose. I know I briefly came to and made a coffee at about 7pm on Monday, and it took everything I had to get into the kitchen and back. The rest is a blur of weird dreams involving a pub fire, going swimming in Italy and a trip to a theatre. Strange but true.
So that’s 36 hours lost so far. When I woke at 6am this morning I knew the worst had passed, the almost coma like feeling had gone, and my mind is awake to some small extent. Enough to slowly write this at least. But I have zero energy, and little concentration. From experience it will take another 24 hours at least before I’m able to actually get up and shower. I won’t be able to read or follow a TV plot properly, and I will probably sleep a lot today, though hopefully more refreshing sleep, not the passed out exhausted-ness of the past two days. Although it’s not an experience I’ve had I imagine I probably feel about the same as a marathon runner the day after, when everything hurts and you can barely move!
This is not a rare occurrence, it happens about once a week. I can lose from one to three days. I do pace my activities quite carefully, plan down days around days I have to be up and out, whether for medical appointments or social. I live alone so I try to get out three times a week for a couple of hours each time, usually a couple of coffees or soft drinks with friends. It’s incredibly easy to become isolated with chronic illness and it’s so very important we don’t.
So today will be a ‘sofa day’, as it happens it’s very rainy and dark outside so a perfect day for a couple of daft movies and snoozing. Then, fingers metaphorically crossed, I’ll feel human again tomorrow 😊
Footnote – it’s curious but common in #chroniclife to feel the need to validate ones symptoms and experiences, especially with something like ME which is incredibly still dismissed by some doctors. In this instance I’m actually glad I was wearing my sleep tracker, which has recorded 23 hours of sleep for yesterday. Proof!
*I have referred to and quoted from the American NIH or National Institute of Health because I find their website carries clear and up to to date articles. The full text that I’ve quoted from can be found here.
I don’t know where to start this evening, I just feel a need to write. A lovely old fashioned expression comes to mind, “I’m feeling out of sorts”. It just seems to fit. I feel restless and fidgety and fed up and exhausted all at once. Plus it’s 3am. 3am is always introspective time, ask anyone who doesn’t sleep well!
If I lay it out the last two months look like this – Rheumatoid Disease diagnosis, chemotherapy drugs & steroids, chronic fatigue, pain & inflammation, painsomnia, too ill to work, no income, depression & anxiety recurring. Add in homeless in 5 weeks and that about covers it.
I guess if there’s a time in my life to feel out of sorts now is it. The biggest frustration is I’m a fighter, always have been, I fix things. And I just don’t have the energy. I spent yesterday packing up boxes ready to move at a very slow and steady pace. Then I lost 80% of today to sleep because I was so exhausted. That’s what this does, and it’s the hardest part of this illness for me to accept.
I totally understand the spoon theory, I have a limited amount of energy per day, and once I use it it’s gone. Period. If I push myself I steal spoons from the next day.
I’m just finding it really difficult to accept how low my daily ration of spoons is, and how quickly they become used. I packed 7 boxes of books (yes I have a lot, no I can’t get rid of them!). That would have been an hours work last time I moved, instead it took me 5 hours with breaks. And it seems that was still too much.
I commented as part of a discussion recently that the existing spoon theory felt right to me, but the energy used for tasks felt wrong, for example a days work as 3 spoons and prepping a meal as 2 spoons – this doesn’t equate for me at all. Someone suggested I write up my own spoon chart, perhaps I should make that my task for tomorrow. Along with maybe 3 boxes of packing!
I think more importantly tomorrow I need to use some time to work out three things. What needs doing, what I can realistically do by myself and what I will need help with. I have to start accepting I can’t do it on my own, and that means asking for help, bit of an anathema to me!
That more than anything else is probably behind my out of sorts moment, I worry that if I ask too much I will be a nuisance and eventually a burden. People say “if you need help call me” but do they mean shifting boxes of books from my lounge to my garage? I guess there’s only one way to find out…….
If by any chance you’ve not read the Spoon Theory, the link is below:
And again today I feel like I am losing myself to the demon that is RA.
From no sleep to hours and hours, punctuated by half waking moments where I heard my neices and nephew playing in the garden but was too bone achingly tired to even lift my head from the sofa.
It felt as if all around me the beautiful island of Cyprus was enjoying the sunshine, but I was trapped in a separate place where energy may as well have been unicorns.
Trying to explain fatigue is incredibly difficult. Ask almost anyone who suffers with RA and they will tell you how debilitating it is, I’ve had many agree with me that the fatigue is worse than the pain. Seriously, offer me a partial cure for RA that will either remove the godawful joint pain & corrosive damage, or remove the fatigue, and I’ll take the latter.
It’s bearing a crushing weight even when you’re laying down and not moving, it’s feeling totally, mind numbingly, exhausted regardless of two hours or twenty hours sleep. It’s being surrounded by a cushion of dead air, it separates you from the real world where people live and breathe and move and laugh and just be without it being so f*cking difficult. It’s walking to the bathroom and back and having to sit down and rest.
Add all that to an constant aching that doesn’t leave out a single part of your body. That’s fatigue.
It is the most debilitating thing I have ever known, and the most frustrating. It makes me angry and it makes me sad and it sometimes makes me scared for what lies ahead.
I am trying very hard to stay positive, I’ve only been on methotrexate for 6 weeks, prednisone for four weeks, I’ve now had my folic acid upped and we’ve added vitamin D to the mix. It could all start working any day. The odds are between 30% and 50% of this combination of meds working for me. Not the best, but certainly possible.
In the meantime I’m mentally crossing my fingers (can’t do it physically anymore!) that I’ve got enough spoons tomorrow for the planned visit to Limassol Castle and lunch with my sister-in-law, it’s a couple of hours, should be easy, right?!!
OK so one day last weekend I achieved. I wrote this later that day.
I had a plan in my head for the morning I knew would be a struggle. Firstly because it meant getting up, secondly because it involved some small physical exertion.
In essence boxes into car, drive to car park, unload car, sell stuff, drive home. 2 hours tops. Simple.
In practice I mentally shoved my incredible fatigue to the back of my mind behind a cupboard, then grabbed the incipient pain and closed the door on it before it started showing off too.
By 10.30 am I had been up for an hour, had sold most of my stuff and was begging myself for Tramadol (This is a mental battle I’ll go into another day).
I was determined to have a “normal” today, so I pushed on, met a friend for a drink at lunchtime then hit my local for one of their fabulous roasts. This is where it really went wrong.
I nearly cried as I struggled to cut up my food, my hands were agony. It ruined most of my enjoyment but I was there, I struggled on. I wanted the tramadol more and more but I won’t take them and drive, so the pain crept on.
By the time I got home I was ready to collapse, but some inner stubborn demon made me unload the bits from the car, empty the cat litter and put the rubbish out.
OK. Hands up, seriously rookie mistake day. I am now in pain everywhere. Joints throbbing and burning, hands on fire, muscles aching and screaming, and my lower lumbar is beating it’s own tattoo.
So down go the tramadol (finally). And as I lay here waiting for relief and monitor which body part is screaming loudest I am pondering this… I actually feel quite positive. Despite the agony (no exaggeration) some small part of my brain is happy. Satisfied. It’s actually jumping up and down and yelling FURA!
My worry is that this is not a healthy ‘high’. It’s great that I feel achievement, but it really sucks that the only way I can do that is by literally ignoring every pain receptor in my body until it screams stop. I suspect my good mood will drop as the pain increases now I’ve stopped moving.
My mental health is as important as my physical, feeling well is a holistic challenge and must be treated as such. I guess my lesson from today is pace and limits. I suspect my poor body will remind me of this incessantly for a while.