Returning to the World

Returning to the World

This week, I went back to work. I negotiated a phased return so I’m only working Mon, Wed, and Fri for three weeks to see how my body responds. One week down, two to go.

So how has my first week been? Exhausting, and painful. Like, really painful. More than I was expecting. I have three different kinds of co-codamol, strong (30mg/500mg), medium (15mg/500mg) and weak (8mg/500mg). On Monday I took 2 medium tablets in the morning, 1 weak one at lunch time, then 4 strong ones in the evening. By Friday I was taking 2 medium in the morning, 2 weak at lunch time, 4 strong in the evening and chase with 2 more paracetamol. On Tuesday and Thursday I was scared to go back because of that pain that I knew would follow. But I did it, and will continue to do it, because my body won’t get used to it if I just stay home all the time. I bought a blood glucose monitor (to be arriving today) to help me monitor my levels and hopefully adjust my diet even more effectively. It’s something I’ve thought about before, but now it’s even more important that I get on top of my health as quickly as possible, and I’m a believer that the more data you have, the more power you have.

That’s how it has been physically. Emotionally, it has been nice seeing all the old faces, and being back in the lab where I belong. It’s frustrating, knowing that I can do things but not being able to do anything because of the strict rules they have around being officially trained before you’re allowed to touch anything. And the only people who are ‘trained to train’ are so busy with their own work that they’re struggling to find time to train me. That’ll happen over the next couple of weeks though, and I’ll get through the training quickly because I already know how to do it all.

I have noticed some interesting autistic things though that I wanted to mention though. Most predominantly, I have noticed how bad my auditory processing abilities are when there are background noises. In the lab we have several bio cabinets which have built in fans to create a constant airflow. These create a low hum, alongside the whooshing of air. There is also, always, a radio on playing music. The first few times someone tried to speak to me, and I couldn’t understand a word they were saying, I instinctually looked to their mouth and asked them to repeat themselves. When I’ve struggled to understand people before, I have found that watching their mouths form the words helps me to process what they are saying. Only now, of course, everyone is wearing a mask, so their mouths can’t be seen. I found that this tends to send me into a small panic, not knowing where I should look, and actually makes it even harder to understand what is being said to me. I’ve since decided to look at them when I ask them to repeat themselves, so they know they have my attention, then stare at the floor or wall with one ear turned in their direction. This seems to be the best way to internalise the information they are trying to give me. I have wondered what this must look like to people but, if it’s what I have to do, then so be it.

Another thing I wanted to address is masking. For those who don’t know, ‘masking’ is when an autistic person “pretends to be normal” in the presence of neurotypical people. It can be exhausting but is something that we are taught to do from a young age “to fit in”. Now, I always knew that socialising was tiring for me, and that I was always conscious of the things I said and did so as to not seem “weird”, but I never considered those things to be masking. I always thought that everybody did that, and maybe they do to some extent, but since going back out into the public after being free to be my uncensored self for over a year, I have noticed the physical restraint it takes for me to not do certain things. For example, sitting still and straight in my chair, in stead of spinning side to side or crouching in it. When I found myself alone in the lab, I started talking to myself and the equipment, then panicked when I heard someone come in, because I didn’t want to be caught doing that. And a couple of times I have almost done my vocal stim (a low, throaty, croaky, hum) while I was in the office. It took real force to stop that one coming out. So I guess masking was more ingrained in me than I thought, and now I’m out of practice.

The last thing is small talk. I hate small talk and am not really good at it. I’ve only been back for 3 days, and the amount of times I’ve had to answer the questions “How is it being back?” and “How was your wedding?” is overwhelming. Of course the simplest thing to do, would be to just answer the same way every time. Except I hate repeating myself, so I’m always trying to come up with new ways to say the same thing in stead. I’ve never understood how neurotypical people enjoy having these same conversations over and over again, and often they don’t actually mean what they say or say what they mean, they just choose from a list of prefabricated responses. It’s almost like watching two AI characters interact in a game. So, being the unique snowflake that I am, I avoid using the ‘correct response’ as much as possible (it actually makes me physically uncomfortable). But that means that I either end up staring blankly at the person, not knowing how to answer their question, or I say something honest which is often misinterpreted as rude.

A perfect example of this is “How are you?”. The expected response is “I’m fine, how are you?” but my brain always falters here. I know that this is used as a standard greeting and that the person asking doesn’t really want to know how you are, but then why ask the question in stead of just using a statement greeting like, “Hello” or “Good morning” or if you want to be interesting, how about “Howdy”? This is usually the blank stare part for me as I try to decide on a response. Then I’ll usually pick my most prominent feeling at the time (more often than not, ‘tired’ or some variation) and say that. I don’t frequently ask the question in return (which people often think is rude or self-centred) because I know I’ll most likely get another standard response or lie. Besides, if someone wants to talk about themselves then they will, even without an invitation.

One week down. Wish me luck for the upcoming weeks.

My Neck, My Back

My Neck, My Back

Last week I went to see an Osteopath for the first time. I’ve been wanting to see a Chiropractor or something similar for years but never had the money and was nervous about getting there and back on my own.

If you have M.E or another energy draining illness, then you know how exhausting it is to simply hold yourself upright. I spend most of my life lying down, reclining, or leaning forward and supporting the weight of my skull on my hands. So as you can imagine, my muscles have weakened, my posture is horrendous and now my joints are not sitting as they should. Side note: it’s amazing how much damage being sedentary can do to you very quickly.

So it’s always been something that I’ve considered should be part of my treatment/management plan, but it’s not something that is readily available on the NHS since it’s still considered an ‘alternative medicine’. However, after the incident with my neck over Christmas, I’d been living with chronic headaches and a worsening feeling that my neck was just not right. I felt as though at any moment I could turn to look at something, and my neck would seize or crack or something, and I’d be in that agony again. Then I started getting daily neck pain too and that was the final straw for me.

I had contacted the Osteopath in question before our latest lockdown, but when the infection rates started rising again I cancelled my appointment and decided to wait for safer times. But the urgency for my neck to be treated was becoming too much for me to ignore, and I had received my first vaccine, meaning that I was more protected than before (roughly 60% efficacy after the first dose), so I decided to go for it.

The Osteopath was very nice and let my fiancée stay in the room with us too. I didn’t think that this would be allowed but was grateful for it because I have a general anxiety about people touching me, so it was nice to have the moral support (not so nice for him though, the sound of cracking bones makes him nauseous, so I was grateful that he stayed too). But I needn’t have worried, the Osteopath was very professional and asked my permission every time he laid hands on me. He was very young, which made me uncomfortable about my age, but that’s not his fault, and he clearly knew what he was doing.

The experience itself was interesting. Although I knew what to expect and had seen it done on others, it doesn’t really prepare you for the sensation of having your joints adjusted by another person. I knew I would get the best results if I could convince my body to fully relax, but even that was more difficult than I expected. When you have a chronic illness, being in control of your own body become imperative, so being able to go limp and allow someone else to manipulate me is not something that comes easily, and my body resisted. The clicks he got out of my lower neck were subtle but effective. I’m a person who clicks and cracks all the time anyway, just by moving and existing, so I’m used to big, clunky cracks in my joints. What I experienced during this session was tiny, barely audible, baby clicks, but the relief and amount of movement restoration was surprisingly disproportionate.

Immediately after I got home, I felt general muscle soreness (at a completely manageable level) and total exhaustion. I’m not sure how much of the exhaustion was due to the session and how much was from being out in the world for longer than usual, but either way I went and had a ‘nap’ that lasted two or three hours. When I woke, my neck felt so much better. I felt like I had full range of motion back and I wasn’t afraid of hurting myself anymore. It felt like everything was back as it should be. I wouldn’t say it was the best it’s ever felt, but it was as it was before the Christmas incident, and that was more than enough for me. I wanted to wait a few days to see if my body would accept these changes gracefully, before making a final decision about whether the treatment was beneficial or not. My body usually takes two days to react to any kind of exercise, illness, medication, or other physical change, so I knew that just because I felt good right away, that didn’t mean I would continue to feel good. But I did. I did have a little extra fatigue and I found that as my neck got used to sitting in the correct position again, it referred some of its usual pain to my traps and shoulders, but the pain faded and my neck still feels good.

The Osteopath had told me that he’d worked on people with Fibromyalgia before so was being gentle with me and not doing too much so that we could see how I reacted before doing any more work. I am definitely considering going back and having him take a look at my scapula’s, maybe take away some of the pain I get from slouching all day and leaning on things when I stand and walk.

Overall then, a very pleasant experience for me. Of course not all treatments work for all people, but I’m glad that I finally got the chance to try this one out and I would recommend trying it if you’re curious.

How Are You?

How Are You?

Sorry it has taken so long for me to get around to this. Doing anything is difficult when you’re depressed. But more on that later.

For now, I’m going to give you a general update on my health. The itching went away by itself, about 3 weeks after my last post. I was taking 2 antihistamines a day but I don’t know how much of an effect they actually had since I started taking them before I went to see the doctor. Does it usually take 4-5 weeks for antihistamines to work?

But I’m explaining things out of order. The blood tests that I mentioned in my last post, all came back normal (as is always the way), so I know it wasn’t cancer, or thyroid issues, or MS, or any of the other things that I was worried about. What it did mean, was that the doctor didn’t know what was going on (as is always the way). She did, however, ask about my M.E.

I think that since “long Covid” has become a thing, doctors have suddenly become more familiar with M.E (also known as post viral fatigue) because it shares so many symptoms and similarities (ikr, who’d’ve thought🙃). The doctor asked me when I’d been diagnosed, and I told her that I hadn’t officially yet. So, she said that she would put in a referral for me. She told me that it would need her to fill out an evaluation form, and that I’d also need to have another set of bloods done and a urine test. She called me the next day to ask me some questions about how my illness effects my day to day life. But at the time I was having kind of a brain foggy day and, since I’ve been living with this condition for so long, I’ve learned to adapt to my limitations. I find it difficult to determine how much the illness impacts my life since my measurement of “normal” has shifted so much, so I basically ended up telling her that I’m actually doing quite well and live a relatively normal life. It was only when I was talking to my fiancé afterwards about it, that I realised it still impacts my life every day because I have to make adaptations to live. If I were healthy, I wouldn’t need to make all of these allowances in order to just go about my day to day business. I intended to tell her all of this when I called her back for the blood and urine results, but unfortunately I haven’t been well enough to go ahead with any of that.

The 4-5 weeks worth of itching really took it out with me, and then there was an incident just before Christmas where a muscle spasm landed me in A&E. I’ve been weak ever since and the holidays in general are always a stressful occasion for me. So basically, I’ve been in a flare for about two months, with the odd ‘okay’ day.

Now (as mentioned at the start) my mental health is really starting to be affected. Not just because of my physical illnesses, the pain, fatigue and insomnia that comes with all of that, but also because of the state of the world as it currently is. I’ll go into that in more detail another time though, it deserves its own post.

I am also currently at my highest ever weight. Even back when I was almost completely bedbound, I never got up to this weight. Part of that is because, back then, I had to look after myself, so if I couldn’t get out of bed, I couldn’t eat very much. But now I have a fiancé who cooks all my meals for me, so that means that I’m still eating loads of calories but not burning them off, so my weight keeps rising. I have just bought myself a treadmill, which is something that I have wanted for as long as I can remember, and I’m planning to start walking, a little bit at a time, to build up some strength and stamina, without having to go outside.

I can’t think of anything else to tell you at this point. Basically, everything is crap.

Special Holiday Edition Update Blog Post!

Special Holiday Edition Update Blog Post!

Photo by Oleg Zaicev on Pexels.com

Happy holidays, whatever and however you celebrate this time of year, or hi, if you don’t celebrate at this time of year. I am a Wiccan so I celebrate the Winter Solstice (Yule) on December 21st. My soon-to-be husband is atheist so celebrates with me. Under normal circumstances, we would then visit his family on Christmas day (or Eve, or Boxing day) to celebrate with them. But as everybody knows, 2020 has been a special year so we have had to do things differently.

Our celebration went ahead as planned, though it was slightly more subdued than usual. Some of our gifts didn’t arrive on time because the usual seasonal post hold-up was exacerbated by the fact that everybody had to do their shopping online this year. Also, certain manufacturing or distribution businesses where not functioning as they normally would (because of the evil virus), and adding Brexit into the mix made shipping across borders more complicated than it needed to be. All in all, it wasn’t as bad as it could have been, but it also wasn’t the standard that we are used to. Still, we opened the presents we did have, we listened to festive music, and we had a lovely roast dinner. I was planning on making some traditional food treats too but I’d been in a flare for the past week and didn’t have the energy for it. The day before I even pulled my wheelchair out of retirement so I could join my fiancé for the Yule dinner shopping. One tradition that we didn’t get to carry out on the day, was the lighting of our patio fire. It was raining, that was all, we figured we’d just do it the next day.

Then the next day came. Something ridiculous and unpredictable happened. I woke up in the morning, stretched all sleepy eyed, and heard a loud crack in my neck followed by agonising pain running down my neck, back and along my shoulder. I could barely move. On the typical 1-10 pain scale, I was at a 9. I was crying and trembling with the pain. My fiancé put some ibuprofen cream on my neck, back, and shoulder, and I called the GP, sobbing. The receptionist said that she would put me on an ’emergency’ list, meaning that any doctor from any GP could call me back to advise me. The soonest that someone would be available was in 2 hours time (11am). I swallowed some paracetamol and waited.

When I got the call, 3 hours later, I explained what had happened. I stressed the amount of pain I was in, telling the doctor “I have a high pain threshold, I have a chronic illness so I know what pain is, this is unbearable.” He booked me an appointment to see a doctor for an exam later that evening (7pm). In the meantime I swallowed more paracetamol, placed a hot water bottle on my neck and breathed deeply, praying that the pain would subside. It didn’t, but it did drop to a 7.

I went to see the doctor, he prodded me, and told me I need to go to A&E for an x-ray. He was shocked that the doctor on the phone hadn’t told me to go immediately. He said, “I have no scanning equipment here. All I could do is give you some painkillers but since I don’t know what’s causing it, I don’t even know if they would work.” He apologised over and over that I had been waiting in pain all day and there was nothing he could do. I was fuming at the phone doctor and felt sorry for the helpless doctor. So to A&E we went.

We were taken into a bay pretty quickly (about half 8pm) and, thank God, my fiancé was allowed to come with me. He was amazing, stroking my hair, showing me funny memes on his phone, making me laugh, keeping me comfortable, finding out where the toilet was for me (side note, I had diarrhea all day too so frequently had to rush, as much as I could, to the toilet and back. Definitely made the pain worse and worried me more about injuring myself). Unfortunately the bed/examination table that they had in the bay was far too uncomfortable for me to lie on, so the longer we waited the more my M.E flared up. I was getting more pain in other areas of my body, my muscles were weakening, struggling to hold me upright, and the exhaustion was setting in. Lying down made my neck worse but took the strain off of my body, sitting up was less painful for my neck but made the pain elsewhere worse. I just kept switching from one to the other, never really getting any relief.

When the doctor finally came round (about half 11pm), she asked my fiancé to leave, but we were near the end of our journey by that point so that was okay. She felt the vertebrae in my neck, then started pressing down on the muscles, asking me where the pain was. She kept saying “Yep, yep, yep” whenever I said it hurt, then followed up with “Yeah, I’m just poking all the places that hurt when I get a sore neck.” Within seconds she told me I had a severe muscle spasm and that I wouldn’t need imaging, just some diazepam. A few more minutes and I was escorted into another room by a nurse who gave me the diazepam, and two more paracetamol with a small cup of Lucozade. Then she disappeared. I asked another nurse if I was allowed to leave and she thought I was being obstinate. She told me in a stern nurses voice that if I leave now then I won’t be given the medication that I’m supposed to go home with. I explained that I just wasn’t sure what the protocol was and asked how long it would be. She gave me a list of events rather than a time frame, so I just went and sat down, closed my eyes and hoped the time would go quickly.

I was finally allowed to leave at about 12:30am. The nurse asked how my pain was and I said “much better”. She looked concerned and asked “Better? Not gone?” She told me that they would prefer that the pain was gone completely but they were willing to let me go if I wanted to. I did, and by that point I wasn’t sure what was neck pain and what was M.E pain anyway, so the meds may have worked as they were supposed to, I would have no way of knowing. They had made me a little stoned and I was super chatty for that time of night. Luckily, my fiancé found it funny rather than annoying. Got McDonalds on the way home, went to bed about 2am, exhausted but with my pain at a far more manageable 3, but still not gone.

The next morning (this morning) I was still at a 3, but when I got up to go to the toilet and sat up in bed, it increased to a 5. I took more paracetamol and the diazepam they sent me home with. My pain has since been hovering between a 3 and a 4, but I’m still not sure how much of it is neck pain and how much is M.E flare up. I’ll just have to take it easy the next few days and hope I steadily get better.

All in all, an interesting holiday. Not how I would have wanted to spend it, but pretty in-keeping with the 2020 vibe. I hope you all have a better holiday than me.

Best Wishes.

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.

Clevermind

Clevermind

Recently, I’ve been thinking about the mind-body connection. We all know about psychosomatic illnesses, the placebo effect, and how a stressful life can lead to heart disease and vegan yogis can live to be over a hundred years old. So it is well established, with medical science as well as observational sciences, that positive mindset improves health and boosts the immune system, whereas negative mindset contributes to poor health and shorter life span.

I have a number of questions surrounding the studies that have been done on the mind-body connection though. For example, I wonder if mindset actually has more of an effect on behaviours that influence health, rather than a direct effect. I.e, if I feel more positively about my prognosis then I’m more likely to take my meds on time, eat better, exercise, look after my hygiene etc. Whereas if I feel hopeless and like I’ll never improve, then I’m more likely to lie in bed, eat junk food and feel sorry for myself. I’m not saying that there isn’t a direct effect, but I wonder if other variables are being discounted in certain studies.

I also wonder about the chicken or the egg aspect, i.e, are people sick because they’re depressed or depressed because they’re sick. I wonder about children who are born with certain illnesses, and who are the happiest, most positive people on the planet but still end up declining and dying regardless.

I wonder how much of the mind healing the body happens innately, and how much of it requires focused cognition. If we stop complaining, repeat daily mantras and visualise ourselves as healthy, happy people, will our bodies feed off of those signals and begin to improve? Or do we have to meditate on the specific area of the body that is damaged and will it to function correctly?

I’ve spoken to a couple of people who have experience with this, and I’m planning to listen to some books that focus on the topic more in depth (including neurological studies on the Vagus Nerve and its effect on the immune system). But, as anyone with a scientific mind would do, I also want to carry out my own experiements.

I frequently practice reducing my pain with my breath and visualisation techniques. I often find that ignoring or distracting myself from the pain only makes it worse over time, whereas if I take a few moments to sit with the pain, observe it, and breathe through it, then it can either lessen in intensity or dissipate entirely. Similarly, there are times where I’m stood at the bottom of the stairs, clinging to the bannisters, looking up in despair as my legs tell me that they are just too tired to take me up, then I take a long, deep breath, imagine the remaining strength in my body and lift myself up one step at a time. So, I wonder what else I can apply this technique to? Pain and fatigue are neural messages being passed from your limbs to your brain, so it stands to reason that I can send messages back the other way to over-ride them, but could I convince a rash on my hand to heal faster? Or an ulcer in my mouth?

I have no doubt that over time the body will heal from an improved immune system and better functioning organs and more regulated hormones, but how much time is required? How much energy is required? How much focus? These are all things that I’m hoping to learn more about.

I have been told that there are people out there who have cured themselves of M.E with the ‘mind over matter’ technique. But my skeptical mind tells me that if they have truly been ‘cured’ then they probably didn’t have it in the first place, and were in fact just suffering from general fatigue. If they have been ‘cured’ in the sense that they no longer have symptoms, then I say, yeah, I did that too, but it’s reliant on my continued treatment regime. I believe that if those people stopped doing all the other things they are doing to keep themselves well, but kept their positive attitude, their symptoms would come back. After all, is it possible to destroy tumours with positive thinking? Or regrow pancreatic cells?

These are things I’ve been thinking about recently. I want to believe but I can’t help but be skeptical.

Trading Places

Trading Places

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


My partner is ill. He has shingles. He has been describing to me the kind of pain he’s been feeling, a sensitivity on the skin and shooting pains like electrical shocks through him. Everything he talks about is very familiar to me. It’s the kind of pain that I get in my legs when I’ve over-exerted myself, or I’m in a flare, or sometimes if I’ve just been wearing tight trousers or leggings all day. I told him, “That’s what I feel when my legs get twitchy.” I call it that because the ‘electric shocks’ make the muscles spasm, and my legs literally jump and twitch, sometimes even while I’m sleeping. Again, this is something he is experiencing and also describes the muscle ache that feels like you’ve been working out.

As much as I hate seeing him in pain and I want him to feel better, I feel a strange kind of validation that he now knows my pain. From this point on, when my legs start to twitch he’ll have a better, fuller understanding of what I’m feeling. He’s always been sympathetic and caring and understanding, so it’s not like this new knowing will change his behaviour towards me, but I will feel more understood all the same. Like trying to explain colours to a colour blind person. They might sort of understand what you’re getting at but they can’t know what those colours really look like without seeing them.

It’s also a strange experience being on the other side of this dynamic. Seeing his pain and understanding what it feels like. Knowing that there is nothing I can do to help. Appreciating for the first time what it’s like to see the person you love in pain and being unable to do anything about it. I wish that I could take it from him since I have more experience with this kind of pain.

In a way, it feels personal, like it’s my pain. Like the universe accidentally gave it to the wrong person and I want to be able to say “Oops, that was meant for me” and take it from him. But of course, I can’t. I just have to watch and wait and remind him to take his pills and bring him cups of tea.

I guess every now and again, a little role reversal is useful in a relationship. Being able to view a situation from the other persons perspective gives you a kind of empathy that you can’t get any other way. It might not change the way you behave but I believe that sharing that experience increases the bond between you. Therefore, as much as I hate that this is happening to him, I’m also really glad. I just hope it’s over soon.

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.