Scratch for the Itch

Scratch for the Itch

Just letting you know, this post isn’t technically M.E related, but it is health related so that’s close enough.

For the last week I have been itchy from my neck to my toes. My hands and forearms also escaped so far but the longer this goes on, the more they are being effected. It’s been a week now and the itching is getting worse. I barely sleep because it wakes me up throughout.

The thing is though, there is no obvious cause. No rash or hives or dry skin. Nothing in my washing or cleaning routine has changed. It’s not a deep, burning itch, like you get with allergies, but like thousands of teeny tiny spiders crawling all over me, but scratching doesn’t kill them. Heat soothes it instead of making it itchier. I’ve not been out in the sun or under a lamp or anything. It has been a literally 24/7 itching all over my body and I have no idea why.

So I called the GP and she says “Hmmm… Let’s get some blood tests and check out your liver function and things, and then we can stop worrying.” Before she said that, I didn’t realise that we were worrying.

The closest blood clinic didn’t have an appointment available for 2 weeks, so I had to get one a little further away, and the current state of affairs means busses aren’t an option for me, so I had to walk the 40mins there and 45-50mins back (I’m tireder now).

But before that I made sure that to worry sufficiently, as the doctor had told me to do, I looked up all the things it could be. In the end I decided it was either a dormant virus rearing its ugly head (shingles for example), hypothyroidism, or some kind of cancer. I put those in order of likeliness for you too. Of course the other option is that it’s a new undiagnosable chronic illness that shows up on no tests and has no treatment, but I’m currently refusing to accept that possibility.

I’ve just come back from having my blood taken now. I asked the nurse what “liver and things” actually meant so I knew what I could rule out if the blood tests showed nothing. She confirmed that I was getting the full works. That means full blood count (red cells, white cells and platelettes), blood glucose levels, liver function, kidney function, thyroid function and calcium levels (to check heart health).

I’m supposed to get the results tomorrow and it can’t come too soon. I’m starting to get some bad bruising from the scratching that I’m doing (mostly subconsciously in my sleep). I need this itching to go away. I’ll let you know how it goes.

Tangent: I forgot my keys because I’m not sleeping and was running late for my blood test and, after the locksmith let us back in, he looked at my cane and said “What have you done to your foot, did you hurt yourself?” and I realised that’s the first time since March that I’ve had someone ask me a stupid ableist question. I was annoyed with a hint of nostalgia.

Clevermind Part 2

Clevermind Part 2

Read Part 1 here.

The first book that I’ve listened to is “How your mind can heal your body” by David R Hamilton PhD. He uses referenced studies in his book, which I love, and then includes at the end of the book letters from people who have used the visualisation techniques that he recommends, successfully. Unfortunately, although there were many stories of people shrinking tumours, improving lung function, reducing arthritic inflammation etc., there was only one M.E patient story. She saw a massive improvement in her symptoms in the months running up to Christmas, by making up her own Christmas Carols with lyrics that described her own good health. She claimed that she was so well that she went for a boxing day swim in the sea and had no repercussions. I would argue that her symptoms lessened because she was happy and excited about Christmas so noticed her pain and fatigue less because she was focused on other things. I would also argue that her dip in the sea may have actually helped to treat her condition. There is a certain amount of inflammation that occurs in the M.E body and cold water treatment has been known to relieve symptoms. I would be curious to know if she had gone into the sea another time and had a flare up, or if she’d just never attempted it before.

I wish there had been more stories on my own condition, since that is the one I will be most skeptical about, but I decided (like the true scientist I am) to try out the techniques to see if I saw any differences myself. So, I used a combination of suggested methods. First, I saved 3 Youtube videos that I would listen to before bed. They explained the structure of mitochondria, the proteins that reside within it, and how those proteins work to create energy. Being a Human Biology student, I already know and understand how this works so, theoretically, that will increase the effect that it has on my body. I also created an imagined routine where I have a battery slot in my back and, before I go to sleep, I remove the batteries and plug them into my battery recharger to charge overnight. In the morning I’d put the fully charged batteries back into my back so I’d be ready for the day. The final technique I used was just to periodically tell myself that I was well and I felt fine. I also tried to stay as present and mindful as possible throughout the day, focusing on whatever I was doing at any given time in stead of letting my mind wander or using music or TV to distract my consciousness.

I didn’t fully commit to all of these techniques and generally just did which ever one I felt like at a time when I remembered to do it. But, surprisingly, I began to feel better almost immediately. This was especially shocking to me because, even though I was doing the techniques, I didn’t really believe that they would work at all. Within a week I felt amazing, more well than I have been since before the pandemic started. I was doing all kinds of chores and projects throughout the day, some mental, some physical, and never seemed to run out of energy. My feet started to ache because I’d been on them so long, but I still had the energy to keep going, and I didn’t have any flare-up symptoms at all. I could sit and rest my feet for a little while then get up again and carry on.

It was so surprising to me, that I went over everything else that I had done during the week, and the ones leading up to it, to see if anything else had changed that could explain my sudden wellness. Two things had changed aside from the visualisation techniques. Firstly, I was being more active because I felt I had more energy (again the chicken or the egg question beckons), secondly, the house was cleaner because I’d been cleaning it, but it wasn’t a cesspit before, there were just more dirty dishes and laundry about. Other than these things everything was still the same. My diet, my fluid intake, my hygiene routines, my sleep, my stress levels, no change in anything I could think of.

Then it was our anniversary. On special occasions we indulge in all the sugary, carby food we usually deprive ourselves of. We had two days of donuts for breakfast, pizza and sushi for dinner, plus snacks. I always expect a flare to follow these occasions, but it’s worth it for the celebration (like a hang-over is a risk worth taking for a good night out).

As expected Monday morning I was in a bad flare. I was in an immense amount of pain, my temperature was going up and down like a yoyo, and my body convulsed and muscles spasmed. But, even with all of that going on, I could still walk. I was tired because the pain had woken me up at 5:30am but I didn’t feel fatigued. I spent the day in bed because I know that my body needs rest to recuperate, and because that was where I was most comfortable but, after the pain killers had kicked in, I was still able to go downstairs and put together some (carb free) lunch for myself. This is unprecedented during a flare this bad, usually I’m lucky if I’m able to get to the toilet and back by myself. I suspected that it was because I had been so well previously, that I must have some left over energy that was keeping me going.

Normally a flare like this would last a minimum of 4 days, but more likely a full week is needed before I’m able to get up and out of bed properly, and then it usually takes another half a week or so before I’m able to go back to normal daily activities. Since I was feeling surprisingly good for the amount of pain I was in though, I decided to spend some more of my lying-completely-still-in-bed time to do some more visualisation.

I began with a modified version of something I heard in Dr. David’s book. It’s a breathing technique where you breathe deeply, into your stomach, then back out again slowly. As I did this I imagined my pain as a black tar inside of my body. The air that I breathed in was like a cleansing water, it went in, grabbed the tar and pulled it out. The first exhale was thick, black and sticky, but each breath resulted in a more fluid, lighter colour being excreted as it cleaned my pain away. Finally, clean water went in and clean water came out, and for a little while, my pain was minimised.

I also did a yellow-light-waterfall meditation that I used to do to manage my stress. You imagine a stream of yellow light flowing into you through the crown of your head and you watch as it slowly fills you up. You imagine the light to be warm and comforting and it helps your body and mind to relax. This is a favourite of mine if I can put aside the time to do it, and having done it many times before it didn’t take much concentration to achieve a state of calm in myself.

Another one I used when little pockets of pain just popped up out of nowhere, was to use an imaginary iron to flatten them back out again. Often the pains felt like swollen inflammation and made me think of a boxers face. In a similar way, I used an imaginary old fashioned iron to push the swelling down. The iron was cold too, so that helped to ease the red hot tissue.

Finally, I used the simple affirmations; “I am okay. I am not dying. My mitochondria are multiplying even now. My body knows how to deal with all that sugar.” I spoke directly to my body with love saying; “Thank you for trying to look after me, but we don’t need an immune response. Nothing is attacking me, I don’t need to be protected. Focus your cells on processing the sugar and all will be well again.” I repeated these frequently throughout the day.

By the end of the day I had taken half the amount of pain killers that I had expected to in the morning. I felt a definite improvement although I was still in a bad way. I slept well. The next morning, I still felt pain but it was day 6 pain, not day 2 pain. And still no fatigue, just a little tired. I felt so much better that I cooked myself breakfast (bacon, sausage, eggs) and cleaned out the cat’s litter tray. I still took a ‘rest day’ because I didn’t want to accidentally trigger my body again, but I didn’t really feel like I needed to. My brain got a little foggy in the evening, but that was about all. By day 3 I was up and about and back to doing chores and working on projects again.

To me, this feels miraculous. Never in the history of my M.E have I recovered so quickly from such a bad flare. Again, I went over the previous few weeks to see if there were any other changes in my life that could have prompted such a thing, and I came up with nothing. As I said before, it is likely that had I not been so healthy previous to the flare, I would not have recovered so quickly, but that good health in itself is still a mystery to me.

The flare-up happened last Monday. This Monday, I feel the same wellness that I did before the flare. I will continue to look for other explanations, but for now, I have to conclude that the visualisation techniques actually work.

P.s, I intended to use this blog post to briefly explain the science around why this works and other applications for it (like building muscle mass), but then I had the flare and I couldn’t not talk about that. I might still write the intended post in a fortnight but if you are interested, I would recommend reading the book I mentioned in the intro, it is well written and talks about actual experiments that have been run, rather than just talking theoretically.

Feelin’ Hot Hot Hot

Feelin’ Hot Hot Hot

People with M.E struggle to regulate their temperature. This could be due to a number of reasons, and more research is needed to pin point exactly why this happens, but it is likely to do with disruptions in the nervous system. We don’t only feel too warm or too cold, but our bodies physically respond in an exaggerated manner too as it struggles to regain homeostasis. Some people react more to cold than heat, or vice versa, and some are equally effected by both.

I am effected extremely by the cold. My hairs stand up on end, I shiver uncontrollably, my limbs get stiff and my dexterity disappears as the blood in my body abandons the extremities in order to keep my vital organs warm. Raynaud’s is commonly reported by M.E sufferers and, although I’ve never been so bad as to have numbing or pins and needles, my nails will sometimes turn purple and my fingers will go white. I do generally have poor circulation in my hands and feet anyway, which doesn’t help the situation, but when I get cold cold, they turn to ice. It can also take hours, or sometimes the whole day for me to warm up. I’ll often say “the cold is in my bones” because it feels that no matter how much I wrap up warm and sit directly in front of a fire, the cold is so deep that I can’t rid myself of it.

The “interesting” part of my bodies faulty thermoregulation is that, because it feels the cold so extremely and tries so hard to warm me up, that it often over-shoots. Meaning that I’ll be freezing cold all day, then suddenly boiling hot for 30 mins; sweating, red face, blood pounding in my eardrums etc., then freezing cold again as my body tries to correct itself and overshoots the other way.

Left: October 2019, Liverpool, UK Right: February 2019 Liverpool, UK

It’s a running joke among people who know me that I’m always cold. To see my bare arms is rare, and to see my bare legs is like seeing a unicorn. So you’d think that in hot weather, when everybody else is melting into a pool a sweat, I’d be comfortably warm, right? Oh if only my body followed the rules of logic.

The problem with my body is not that it always feels cold, it’s that it cannot regulate its internal temperature. It just so happen that I live in a country with a generally cool climate, and therefore, frequently feel cold. However, once a year (or sometimes twice, months apart) the UK has a heat wave. When this happens, my body doesn’t know how to react and basically just self-destructs.

The last few days I have been dizzy, nauseous, breathless, breaking out with heat rash and bumps, had muscle cramps, indigestion, headaches, and been periodically shivering. When I asked the M.E community if they had similar symptoms when it gets hot, it was suggested to me that I might have PoTS, which is a common co-morbidity of M.E. This is something I have considered before, but my recent symptoms are not triggered by standing, nor does my heart rate seem to be any different from usual (besides the expected increase that occurs when I get breathless). One person suggested it could be low blood pressure exacerbated by dehydration. This seems much more likely since I’m bad at staying hydrated as it is, and I especially forget to increase my fluid uptake during heat waves, but I have no way of measuring my blood pressure at home, and am still not comfortable leaving the house. Yesterday I had some pins and needles in my finger tips so it might be worth buying a blood pressure machine to make sure I’m not in any real danger while I try and hydrate myself.

Anyway, all of this was just to say, “Eurgh, heat.”

New Normal

New Normal

A large part of keeping myself ‘healthy’ has to do with monitoring my condition on a daily basis and adjusting activity levels accordingly. A certain amount of daily activity is necessary for keeping my joints limber and my blood circulating properly. Too much activity causes P.E.M (Post Exertional Malaise) but total inactivity causes pain and O.I symptoms (Orthostatic Intolerance) so I need to find a balance between the two.

Back when the world was normal, I used to go to University and had a couple of part-time jobs. This meant that I was on my feet a lot (not a lot for a healthy person, but a lot for someone like me), used a lot of brain power, and sometimes did some heavy (not really that heavy) lifting. I was able to maintain my health while doing these things, and if I started to feel a flare coming on, I could take it a little easy (take the lift in stead of the stairs, avoid anything too strenuous, put off complicated work for another day etc).

Post Covid though, the most exercise I get in a day is going up and down the stairs to use the bathroom. I have also suffered from several flares (as mentioned in previous blogs) which may or may not be illness/diet related. Basically, I’m not sure where my baseline is any more because I’m not living a regular life. This means that I don’t know how to adjust my activity levels. Sometimes I will get a specific kind of pain in my lower legs or hip flexors (or both) that I recognise as a sign that I need to go for a walk, but other than that, I’m just guessing.

When I feel unwell I know I need to either increase or decrease my activity, but choosing the wrong one will make me feel worse. It’s not a good position to be in. I need to get some semblance of regular life back.

Fear

Fear

To listen to me read this blog post, please click here: Reading “Fear”.


It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.

Change

Change

It’s been a while since I’ve posted. Uni has been demanding and I need to allocate my spoons intelligently.

Today I just wanted to talk about how my pain has changed over the past few months. I was always very descriptive about where my pain was and exactly how it felt (the benefits of being a writer), so I can compare what I feel today to what I felt before.

The pain I feel now is in the joints, or rather in the creases and folds of skin and muscle where the joints are. It is particularly obvious in the place where my femur attaches to the pelvis. But as I said, it’s not in the bone or the joint itself, neither does it feel like a muscular type of pain. Imagine that you are laying on your back with your knees up and you have a heavy barbell laying across your pelvis at the point where your abdomen stops and your legs begin, right in that crevice. Imagine this incredibly heavy barbell has been laying in that one position for a long time and you want to straighten your legs in the hopes that it will relieve some of the pressure, but when you try to do this, you find another barbell beneath you. This one sit exactly opposite the first, right at the top of your leg, just below your butt-cheeks. So you lift your knees to avoid the barbell on the floor but in doing so you increase the pressure of the one on top of you. So you try to lower your knees again but find that the one beneath you digs into you because of the weight of your body plus the barbell on top, and it causes painful pressure in that crevice. This is the pain I feel laying down, sitting or standing. Different leg positions vary the intensity of pain in different areas but the pain and discomfort is always there.

This is the strongest pain I feel but not the only one. The other pains are lower and feel more like ligament pain. They begin about midway down the fibular and curl around the ankle. It feels as though the ligament is tight and tightening every second. The way to reduce this tightening pain is to stretch and flex the foot, but as soon as it’s stationary the tightening begins again. This results in a constant movement of the foot to avoid the ligament pain in the leg and ankle which in turn causes a muscular fatigue and pain in the leg and ankle.

My flare up wasn’t so bad this time around so the pain was mostly in my lower body with only aches in my back and shoulders. But this change in the type of pain I feel makes me wonder if the illness is progressing, changing or if it’s actually something else altogether. It’s times like this I wish I was in contact with a specialist, I don’t imagine my GP can give me any more detailed answers than Dr. Internet.

There is No Spoon

There is No Spoon

Today I am having a flare up. This happens to me when I try to use more spoons than I have, or if I regularly deplete my spoons without having a rest day to replenish the stocks. Usually, I would have one rest day a week, sometimes two if I use up all my spoons in a day, or more if I do this continually. At present, I have gone 2 and a half weeks, using up all of my spoons every day without taking a rest day.
For those of you who have no idea what I am talking about, Spoon Theory is a commonly used method of explaining what it is like to live with a fatigue inducing chronic illness, where spoons represent units of energy. Here is a brief video that explains it (not mine, borrowed from NewLifeOutlook on Youtube) but there is loads of information about this online if you’d like to look into it further.
For me, a flare up consists primarily of pain. It’s not all that painful but is simultaneously unbearable. The only way I can think to describe it is like a toothache all over my body. I’m also shivering a lot. Not because I’m cold but because my autonomic nervous system is panicking right now at how much pain I’m in. My senses are hypersensitive so I have to keep noise volumes as low as possible and keep the curtains closed, even food smells could set off a migraine. My ability to stand is limited to 3 minutes before I either sit down or collapse to the floor, whichever comes first. My only job for the day is to rest and recover as many spoons as possible. But this becomes problematic when standing, sitting and lying down are all painful, or when I’m unable to cook myself food or get myself anything to drink, and when sleep is nearly impossible.
So all I can do is take as many Ibuprofen as possible (without overdosing) cry, and hope for the best.
Not Enough ‘Suffering’ to be a ‘Sufferer’.

Not Enough ‘Suffering’ to be a ‘Sufferer’.

I am a writer. Not professionally or anything, but it’s my preferred medium of self-expression and creative outlet. So, once I’d come to terms with the fact that I was living with a chronic illness, it seemed obvious that I should write about it. I went back and forth on the idea of blogging about my experience. There are pro’s and con’s to any balanced argument, but the thing that held me back the most was the feeling of lacking the authority to talk about this illness publicly. Let me explain:

Myalgic Encephalomyelitis does not have a definitive diagnostic test, it is a diagnosis of exclusion. It takes a long time and a huge number of tests to rule out what it isn’t before doctors will come to the conclusion that it’s probably that. Therefore I cannot say definitively that this is the illness that I have. Also the list of symptoms that are associated with M.E may not all be present and can also overlap with other illnesses (Fibromyalgia, Lupus, Lyme Disease etc.), and these illnesses may also lack a diagnostic test or they may have an inaccurate test that gives off a number of false negatives. To add to the confusion, some people may have more than one of these illnesses at a time or may have an obscure or rare manifestation of the illness(es).

Secondly, M.E effects every individual differently, firstly in which symptoms a sufferer may or may not exhibit, and also in the severity of their symptoms. It should also be noted that severity of symptoms can increase or decrease from day to day depending on a wide number of variables. The severity of the illness can also be changed over time through medications, therapies and lifestyle changes. The M.E Association has a Disability Rating Scale which briefly outlines the capabilities of sufferers at different levels of symptom severity. I would consider myself to be in the ‘moderate to mildly affected’ section of this scale, being at 20-30% disabled. On a bad day, or if I’ve had several bad days in a row, I could be considered to be up to 60% disabled, but only on extremely rare occasions have I been worse off than that.

To consolidate and sum up, reason number one for my lack of authority on this subject; I don’t know for sure that M.E is even the illness that I have. Reason number two; I am a ‘mild to moderate’ sufferer, meaning that I don’t know what it’s like to be really disabled by this illness.

But as you see, here I am starting this blog about being an M.E sufferer. So I must have reconciled these arguments against such a thing. This is how I intend to over come these issues; with a disclaimer. This blog shall be a sharing of personal experience living with a chronic illness that, for the sake of understanding and categorisation, I shall refer to as Myalgic Encephalomyelitis (or M.E). I am not a professional on this illness and therefore nothing I say should be taken as medical knowledge or advice (unless followed up by a source, in which case it’s your responsibility to follow up and decide whether or not that source is reliable).

Now I am free to share my experiences, opinions, stories and emotional journey without feeling the responsibility of being an authority on all things M.E. Now I can breathe, relax and write with ease. I hope I can be a source of entertainment, comfort and/or comradeship for everyone that reads my words.