A week in the life of an M.E Patient – PART ONE

9th September 2012

There are a lot of myths surrounding the disease known as Myalgic Encephalomyelitis (M.E). “Isn’t that where you can’t get out of bed?” or “ isn’t that where your tired all the time?” are questions I have had quite frequently. If only the answer were that simple. “ Doesn’t exercise make you better”?

So what exactly is M.E? My personal view is that it is a disease characterized by an excessive immune response to a virus which then destroys the brain and spinal chord. It has been classed as a Neurological Disease by the World Health Organisation since 1969. It was once referred to as “post-polio syndrome” and leading health practitioners have likened it to end stage AIDS and Cancer.

“They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, University of Miami, 2006 Press Conference.

The most untold suffering is not that caused by physical symptoms, it’s the anguish caused by disbelief from the medical profession. On top of the agonizing physical and mental stress caused by the disease, we are told that we are well, that exercise can make us better, that there is nothing wrong with us, that we are malingering or neurotic. It is widely acknowledged that many incidences of suicide result from the refusal of doctors to accept that sufferers are ill from Myalgic Encephalomyelitis.

Starting from today I am documenting several weeks in my world, the world of M.E in the hope that those reading may understand what this disease is and how significant its impact is. There are over 250,000 sufferers in the United Kingdom who feel how I feel every single day.

I wake up at around 9am. Even if I can’t manage to get out of  bed I try and get myself awake so I stick to my routine, if I throw myself off my routine my whole body suffers an internal breakdown. Upon waking, I am exhausted; I can barely open my eyes despite last night having gone to bed at 7.30pm and sleeping the whole night through – a rare occasion as I usually toss and turn until about 4am. My whole body aches and pulsates with pain radiating from my fingertips to my toes. My head throbs and bangs and my hair and bedding is soaking wet from the night. I try not to let this get to me and do not think of the day ahead, only minute by minute otherwise it’s just too big and too much.  I slowly get myself out of bed and upon standing the blood rushes to my head and makes the pain worse, typical orthostatic intolerance symptoms. I take two paracetamol and slowly tackle the stairs, one stair at a time, aching and creaking down like an elderly lady. I do like my morning cup of tea so head straight for the kettle and my weetabix and probiotic yoghurt. Once breakfast is over, I take my tea upstairs and set about taking my supplements and pills. I start by taking all my Co-Enzymes, Rhodiola, Magnesium and antibiotics. I then take my second round of painkillers. The B vitamins and painkillers coupled with the tea give me a slight lift so I prefer to tackle whatever tasks I need to do within those hours between 10am and 1pm. Today’s task is cleaning my bathroom which hadn’t been done in a few days, I like to polish the taps and mirrors when I can and wipe all the tiles down with bathroom spray. The whole job takes about 10 minutes but by the time I have finished I have sweat running down my face and my hair is soaking wet again. The exhaustion is profound, my arms and legs ache like I’ve lifted weights, I feel dizzy like I am going to faint and just so ill and flu like. I resign myself to the fact that I should have probably rested and will pay for the piddly amount of exertion I undertook. Wearily, I sit down and play with Roxy for a bit.

The sweat continues to pour off my body and when a bit falls on the floor I realize it’s time to tackle the biggest task of the day: the shower. I detest showering. Our shower comes out so piddly and washing my hair just kills, the pain of lifting my arms up to do it makes me grit my teeth every single time. Every day the thought of showering feels too much, I feel too exhausted to contemplate it but every day I grit my teeth and get on with it. I have to wash my hair everyday because of all the sweat otherwise it might not be so bad. Once I have finished I give myself a little round of applause.

Then the fun begins. I always emerge from the shower bright red, even though I have the temperature pretty cool and rinse my hair with cold water. I sit down on the bed and get redder and redder and hotter and hotter and the sweat pours off me once again. It takes about an hour to cool down by which time I am hot and sticky.

So far I’ve made a cup of tea, cleaned a few tiles and had a shower and it is 12noon. Today is actually quite a good day for me – the past three weeks have been far worse than this with no cleaning or housework at all and flat out all day. I already feel like I’ve run a marathon and the flu like symptoms are increasing as the day goes on. I put on a fresh pair of pajamas and get back into bed – the muscles in my legs and arms are burning and I have a burning pain down my spine.

1.30pm and I put my head down, I am usually so exhausted from being up (for four hours) I pass out around 1/2ish and sleep till 4pm but for some reason today I couldn’t sleep. If I don’t sleep in the afternoons all hell breaks loose. M.E clinics and psychologists do not advocate sleeping in the day but if I don’t, my vision goes blurred, I have been known to have seizures, vomit, get infections all from not enough rest and I get overtired and can’t sleep at night either. Then there is the effect is has on me the next day, I am like a zombie with no energy to even get myself out of bed.

 

12th September

This entry is very hard for me to write as I am feeling particularly ill today but it’s important for me to get people to understand how this illness grabs hold of you so quickly and symptoms wax and wane.

I didn’t sleep yesterday afternoon as I was watching the September 11th memorial at Ground Zero. I have also been working on my piece for the 9/11 tribute and part of my work with the Ground Zero illness sufferers. I am currently writing to the wife of a 9/11 victim which requires the right words and is quite upsetting and draining but important to do.

I got up at 8.45am, I was meant to have a manicure today but I woke up feeling heavy and fuzzy headed so I cancelled it. I had my usual bowl of cereal, cup of tea and medication but felt so unwell I laid back down and fell asleep, awaking again at 11am. My parents were going into town shopping so I set about my daily task which was tidying the house. I gave the bathroom a quick wipe down with some windowlene wipes which requires minimal effort and makes it all look shiny and clean. I did the same in the kitchen and then used my lightweight GTECH carpet sweeper round the house – perfect for people with disabilities. We have guests coming so I wanted the place to look spick and span. Half way through sweeping the upstairs I could feel my heart beating abnormally, skipping beats, very irregular and very fast, I recorded it at around 110bpm. My hands started to shake and I started to feel very dizzy but I always get like that when I stand so I continued, finishing the sweeping in about half an hour.

I sat down for a bit totally exhausted, too tired to feed my cat which would have to wait till parents got back – she’d had two breakfasts anyway, one at 8am and one at 9am!

The next job was to again tackle my daily shower, I felt so unwell I just had a quick one, shampooed my hair, no conditioner, quick lather and a teeth clean.

Showers kill me, I have no idea why, perhaps it’s the standing up but when I got out my whole world changed in a matter of minutes.

My heart palpitations became more irregular and it started beating even faster, I recorded it at 140bpm. I looked in the mirror as I put on some moisturizer and I’d turned a funny white/grey colour. My body felt so light, like I was floating and my head felt like it was buzzing and someone was drilling a hole in it and placing a piece of string and trying to pull me up through my head with the piece of string. I had to sit down. Throwing on some pajamas I climbed into bed, my head feeling like it was about to fall off. I started getting chills and shivering although my face and head was dripping in sweat, I looked like I was covered in water. My whole body was now shaking and quivering and I started to feel nauseous like I was about to throw up. I reached for the anti-sickness.

As well as feeling shivery and chills, I could feel the muscles in my arms searing with a burning pain. My spine had the same pain running through it and my back and neck seared with a ripping, dragging pain. I could feel the glands in my throat swelling and hurting.

I feel too ill to do much; even going on the computer is a major effort. It is now 2.45pm and my nervous system is so overwrought and strung out I know I won’t be able to sleep.

7.00pm

After a rest and watching Hollyoaks I am back in bed. The dizziness and shaking has got worse, my head is pounding and I can feel a fever brewing.

I also have twinges of pain in my liver and feel incredibly sick which I am now worrying about as I haven’t had an attack of Cholangitis for a while now. Generally feel pretty unwell but am remaining quite upbeat.

I have struggled sleeping today and feel like my body is burning more on empty and cannot even attempt to heal itself. 

My neck is by far (apart from the nausea and liver/stomach/bile duct pains) the biggest cause of pain, and the migraines burst through my head, neck, eyes and down into my neck and shoulders.

I can’t think of much else to say tonight, but everything I feel I know is signs and symptoms of continual recurrent infection on-top of the M.E itself – chronic flu-like symptoms and agonizing pain. Whenever you read about M.E no-one ever comments on how painful the condition is, all they focus on is fatigue but it isn’t really fatigue at all,  it’s bone crushing obliterating exhaustion, you can’t move, you can’t think, sometimes you can barely breathe.  

Sunday 16th September

After taking enough painkillers to knock out a small Elephant, I finally move tentatively toward the computer to finish this week’s entry.

Have not had the greatest of days. On Friday we had visitors, my Gran and her carer, my Uncle and his best friend all descended chez moi for lunch which of course means my three worst things: staying upright as of course no-one bothered to check I had a chair and was sitting down, noise and conversation.

All three activities make me feel so ill I am like a useless piece of goo for a few days afterwards. Experts prefer to call this “Post Exertional Neuroimmune Exhaustion”, a ridiculous inflammatory response that kicks in after activity, however small, but I prefer to call it a living hell.

I managed to get through the day anyway. I got up feeling pretty ill and managed to get myself dressed, as usual drenched in sweat after my shower. The family arrived at 11.30am and I managed to stay up until 2pm then I was exhausted and went to sleep.

Whilst I closed my eyes I saw flashes of light. I keep getting flashing spots when I close my eyes and my head feels like its spinning and sinking into the pillow and is going to come out the other side of the bed, a strange sensation.

Am having to take a break now as I feel too ill to type and am in too much pain, the back of my neck is ripping and burning, my head is pulsating with pain and my hands just won’t move to type. See you all later when I resume this entry.

7.40pm

Having got up at 9am, gone back to bed at 11am this morning with a fever then passed back out at 4pm I can safely say this day is a complete write off. I managed to eat some dinner and wipe up afterwards but the sweat is literally pouring off me, my head feels fuzzy and I am so dizzy I am frightened I am going to faint so I crawl back up to my room. My glands are all swollen and I have a fever. Whilst I was eating my dinner my right leg started jerking and convulsing as you do. My chest hurts and I am finding it hard to breathe and am constantly attached to my inhaler. Top it off, I am cold, yes cold, I have goosebumps. Must be the fever. This relapse is from having people round for a few hours, my body cannot cope with it and people just do not understand how draining it is when you are unwell.

Tuesday 18th September

My batteries are well and truly drained. I went to the chiropractor yesterday and sore doesn’t even come into it, I feel bruised and battered all over my body. I awoke at 9am and just could not get out of bed, my eyes kept closing and I felt heavy, achy and flu like all over my body but pushed on through and made my appointment at 11.40am. My head felt like it had wires coming out of it and people kept making the wires electric shock – like an inner vibration inside my head coming from an electrical charge. As the day progressed this pain got worse. I arrived home from the chiropractor to have some friends round; I could only sit up for 40 minutes as I felt so ill I had to excuse myself as I nearly fainted. As I was partaking in conversation I could feel my head spinning, so many things I wanted to say but too ill to say them. It was lovely to see my friends again, I never see anyone so I was so happy they were there even if I had to cut the visit short.

I went to bed around 2pm and when I woke, I could feel the post exertional malaise setting in. Bearing in mind all that triggered off a relapse was a visit to the chiropractors 20 minutes down the road and sitting in a chair talking to my friends for half an hour.

“Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.

I awoke from my sleep feeling like I had the flu, basically. My muscles were throbbing and heavy, I felt weak and my pulse was far too fast.  I could barely move, I tried to turn over in bed but struggled to even do that. My head was sopping wet and I felt feverish. I awoke around 6pm and my dad kindly made me some spaghetti and heated it up as I was too weak to even get to the fridge. I watched TV for half an hour whilst eating a small portion of spaghetti then I collapsed back in bed again before I fainted.

I awoke the following morning and felt no better, in fact I felt even worse. To state I felt tired, or fatigued is ridiculous, if it wasn’t so serious I’d laugh. As Laura Hillenbrand, author of “Unbroken” and “Seabiscuit” states (Laura also suffers from M.E) “fatigue to this illness is what a nuclear bomb is to a match; it’s an absurd mischaracterisation”. The exhaustion drills right through to your bones, your body feels too heavy to move and when you do your head feels like its being held together by electric wires that keep shocking. My glands are so swollen they feel like giant bruises in my neck, under my arms and in my throat. The pain pulsates and radiates through your body, my hips grind together, my lower back clicks in and out of place and my knees just don’t support my legs, I nearly fall down the stairs when descending to get breakfast. I wonder if this latest relapse will last for long? I make a cup of tea and try not to focus on how ill I feel. After my usual routine of tea drinking and pill taking I feel a major migraine coming on so I take my strong painkillers and lie down, putting an episode of LOST on in the background.

I go back to bed at around 2pm but can’t sleep, I get an agonising ripping pain going through my liver and I feel like I am about to throw up. I run to the toilet but nothing so I take a few antisickness meds. Then I realize that I am missing the big Lipkin Press Conference in New York. Trying not to curse my terrible memory I log on to my computer and access Colombia Universities webcast. A mixture of good news and bad news, I knew that retroviruses and the association of them with this disease were over for now but I wasn’t expecting Lipkin calling all patient advocates to arms as it were, to fight for recognition. He also said he wasn’t giving up on M.E patients. Then a miracle happened – the fog cleared, the exhaustion and pain subsided enough for me to write a piece about the press conference.  Perhaps it was the two tramadol combined with the naproxen and paracetomol. Who knows, I managed to work until 4pm, then I microwaved some leftover Thai curry and am now back in bed not feeling particularly tired but feel motivated to actually do something. All those who keep banging on about ‘positive thinking’ can do one, I haven’t shed a tear for myself, only for others.

The pain in my back is still pretty bad though, my neck has seized right back up to where it was before and my lower back and hips are killing me. Oddly enough the work done on my ribs has helped loads; I can actually breathe again properly which is such a nice feeling after being so constricted for months on end.

22nd September

I wake up late after a rather bad night, lots of bad dreams and waking up in a sweat and a sore throat. I get up then realize this is probably a bad idea as the minute I am upright I start to shake, like a severe tremor. I feel shivery and freezing cold even though today is rather nice outside, and feel extremely viral, like I have a case of bad flu.

“A bad day”, I think, “oh well, it happens” as the past two days have been ok. I can feel I have a fever and feel rather dizzy but refuse to be deterred from getting a cup of tea. I make said cup of tea and the shaking gets worse. I have my breakfast and when putting the empty glasses in the dishwasher I come over really dizzy and drop one and it falls on the floor, miraculously bouncing and not smashing.

Am starting to get annoyed now. My parents go out and I feel slightly better after my tea so I tackle some light housework and have a shower, which nearly finishes me off.

After my shower I am so dizzy I nearly vomit, pulsing sensations going through my head and I nearly faint downstairs in the hall and the shivery flu feeling is back plus the shaking is worse than ever. Am putting myself on bedrest and will update later.

24th September

Today is a bad day. I went to bed early last night with a migraine and a fever, cutting X Factor short and missing Downton Abbey much to my annoyance.

I wake up at usual time, around 9am but today just cannot move. My body feels like a lead weight and my head is pounding. The plan today was to carry on with my awareness leaflet and just rest really, I was going to clean the kitchen as it was a mess from last nights roast.

I force myself out of bed for the usual tea/breakfast/pills routine but am just too ill. Forcing down a bowl of cereal I shuffle back upstairs with my tea and crawl back in bed. It feels as if someone has replaced my brain with cotton wool, my head feels thick and woolly and the atmosphere feels as if it were made of treacle, that I am wading through it and keep getting stuck.

I fall back asleep with Roxy for around an hour then try and get up, but feel too dizzy and ill, so weak like a floppy rag doll so I lie back down. I then get back up and repeat this ridiculous charade of getting up, too weak,  get back in bed for another few hours, until I realise I probably won’t sleep. It is now 2pm and I feel so dead. I made myself get up and have a shower but haven’t tidied away a single thing today. I haven’t eaten either, the thought of beans and egg on toast is tempting but I feel too weak to muster the strength to go downstairs which is a long way away, we have a huge house.

 

 

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7 Comments (+add yours?)

  1. snottydog
    Sep 24, 2012 @ 17:01:25

    Hi, I have M.E. too and experienced most of the symptoms you talk about, plus others. And you’re right, people who haven’t had it, or have only had mild symptoms really don’t have a clue.

    I am concerned to hear you talk of eating weetabix and spaghetti – gluten is often one of those things that make symptoms way worse in those of us with M.E.

    Have you considered going gluten free…?? I urge you to try it for a couple of months if you’re able.

    There is more information coming out all the time about the possible effects of gluten on our bodies. This is a very interesting article:

    http://lifeischange.wordpress.com/2011/04/12/gluten-ataxia/

    Hope you are feeling as well as possible.

    Louise xx

    Reply

    • sciencevsantiscience
      Sep 25, 2012 @ 15:52:34

      Thanks for the comment. My eating habits are pretty bad as I just eat what my mum cooks. I have tried giving up gluten but it didn’t make any difference to be honest although I don’t eat bread anymore. xx

      Reply

      • snottydog
        Sep 25, 2012 @ 20:28:31

        Try and have a conversation with your mum about improving your diet – if you think about it, you wouldn’t expect a race car to be run on coal – we get ill, but seldom do people attribute how badly our body “runs” with the fuel we put into it. xx

  2. Donna O'Donnell
    Sep 24, 2012 @ 20:40:35

    ahhh your words describe me for the whole of 2011. Painful to read, emotional to acknowledge but gratitude for sharing the truth of existence with M.E.

    Reply

  3. Jayne Eldred
    Sep 24, 2012 @ 23:26:50

    Hi, Good on you for doing this – people really do have no idea. I have a daughter with ME, moderately severe, since the age of 13 and now 21. I have to say, and I hope you don’t mind, that it sounds as if you are doing way too much, given how ill you are. Is there some way you could get more help? If my daughter tried to do that much she would be crashing constantly. Also, in the early years, we were advised for her to keep going … end result, she became much sicker. Wishing you all the very best. Jayne 🙂

    Reply

    • sciencevsantiscience
      Sep 25, 2012 @ 15:51:21

      Thank you for your comment. Yes I probably do overdo it but just lying here trapped drives me mad. Despite the psychiatrists who state we are just malingerers who are scared of being ill and fear our symptoms and enjoy sitting around “playing the illness role”, I was always such an active person, I loved having fun, I worked in music and marketing and was always on the go, in the gym, going out, I never stopped so being so restricted is really hard for me. I will try harder!

      Reply

  4. konarose
    Jan 30, 2013 @ 01:29:47

    I so feel what you are saying. My life is similar, but I cannot even get my own food. I went gluten free for 6 months, no difference. I am now meat free and drinking Kefir. Lord knows we all take wheelbarrows of supplements in hopes something will help. I’ve tried endless recommendations. No, I don’t want to hear anymore about what to try. My goal each day is to survive, then go to sleep. Showers also take me close to death with a sweaty and tachycardic recovery period after. I cannot tolerate any change in temperature – cold or hot. It’s just gotten so much worse. There is no vocabulary to describe the sheer and brutal, ill exhaustion – my arms and legs burn and feel like they are made of pure lead. When I walk to the bathroom, it is like trudging through thick, wet cement up to my neck. It’s only 8 steps away, but when I get back I am out of breath, weak and dizzy.
    Thanks for sharing a porthole into your world. You are not alone ❤

    Reply

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