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.

Using my public platform as therapy (again)

Using my public platform as therapy (again)

I had my second jab (Pfizer) on Friday. It was fine. My arm was killing me for a day and I felt slightly more fatigued than usual, but that was all. Now I have no more excuses to stay home. After 1 year and 2 months of being almost exclusively confined to my home, I now have to re-join society.

I’ve spoken to the HR rep at work and we have agreed to a phased return (starting with 3 days a week until I feel able to do more) beginning on May 10th 2021. I am terrified.

I want to specify, I’m not afraid of the virus. I mean, I am, but only mildly. I have faith in science, in my workplace, and my colleagues to keep me safe. I think my chances of catching the virus are slim to none. What I am experiencing is a generalised anxiety that I haven’t felt for many years. It’s a fear of being away from my safe space and of facing the unknown. This is a fear that I have faced before, and has always been a part of me but, with practice, I was able to ignore it and live life anyway. But I’m very out of practice, and the idea of my home being my ‘safe space’ was intensified by the fact that people are literally dying by the million outside. So the general anxiety has become more akin to a phobia.

Problem solving time. I often talk about having two brains. I have an emotional, irrational one, that feels all the things with or without reason, and I have ‘Logic Brain’, who does all of the thinking and rationalising. When I was young, Emotional Brain was in charge of everything, and would shut up Logic Brain with “If that’s true, then why does it feel like this?”. As I grew up, I thought that the goal was rid yourself of the irrational feels by logic-ing them away (turn the light on to prove to yourself that the shadows aren’t real and can’t hurt you). Now, as a psychologically mature adult, I realise that neither brain is more right than the other and that communication between the two is key.

Therefore, the first questions are always, what are you feeling and why? The first one is pretty easy, fear and anxiety. The ‘why’ is more difficult. Logic Brain tells me that there is nothing to fear, nothing that I will encounter will harm me, and I am not in danger. But that doesn’t help, never does, never has. When I’m struggling to pinpoint the cause of my fear, I run through the scenario in my head and pay attention to which parts trigger the fear. When I think about the work, I’m actually really excited and looking forward to it. It’s what I trained to do and I love it, and even though it’ll be unfamiliar work to me, I love learning, so that’ll be fun. When I think about seeing the people, some I will have worked with before, some I will have worked with remotely but not met in person, and some will be completely new. I’m not a fan of socialising and meeting new people, but I know the atmosphere of the company is a friendly, respectful one and it will be nice to be able to mix with people who share my interests again. It turns out, the things that are scaring me are; getting to and from work, how well my health will hold up (i.e, how painful will it be?), and having nowhere to retreat to if things get too much. So let’s unpack these, shall we?

Number 1. Getting to and from work. I had planned to be driving by now but, long story short, I’m not. I used to get the bus(es) into work, but they are now at the bottom of my list, partly because lots of people in a tin box is a breeding ground for all kinds of things that can kill you, and partly because I had to get up at 4am to get to work on time, and that will negatively effect fear number 2. Currently my plan is to carpool with a fellow employee coming from the city. If they are unwell or unable to make it for some reason, then a £40 Uber is my backup plan (app downloaded and addresses saved and at the ready). It’s not ideal, but it’s a stop-gap until I’m able to drive myself, which is the official plan.

Number 2. My health is not as bad as it could be, but by no definition is it good. It won’t hinder me in doing my job, I have struggled through Uni when my health was much worse, but I am afraid of pain. I can take painkillers before, during and after work, but they only take the edge off, they don’t rid me of the pain completely. My best defence here (besides the painkillers), is to adjust my diet and adhere to it strictly, rest as much as possible when I’m not at work and, don’t be a hero, ask for a chair if there isn’t one. Experience has taught me that I will get used to the extra activity, as long as I care for myself properly.

Number 3. This is another thing that having a car would fix. Sometimes, being around people and noise and smells and places gets too much for me and I need to retreat to a confined space that is silent, where no-one can see me. Usually, this would be a bathroom stall, but I’m not sure about the safety rules that have been put in place regarding toilets in the building. This is something I will need to look into, but stairwell is also an option. Solutions to this problem require extra research, but it’s not information that is difficult to get hold of, and I can definitely prepare for this beforehand.

So there we have it. Emotional Brain has calmed down a bit because instead of telling it that there’s nothing to be scared of, Logic Brain had put plans in place to ease the fears. The anxiety is still there, but it’s less, and over time, with repeat exposure and further developments, it’ll become pea sized and manageable again.

Thanks for helping me with my therapy today. I hope you’re all well. :smiley face emoji:

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.

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.

Knees Bent, Arms Stretched, Ra Ra Ra!

Knees Bent, Arms Stretched, Ra Ra Ra!

I weighed myself the other day. I knew that I put on weight since the virus thing had us all trapped in our homes, but it happened so gradually that I hadn’t realised how much I’d actually put on.

I haven’t been this heavy since I was almost completely bed-bound, which makes sense considering that the last few months I’ve just been going from bed to couch and back to bed again. I am still eating relatively well, which is probably the only reason that I’m still as healthy I am, but without daily exercise it just isn’t enough to keep the pounds off.

I’ve been thinking for a while about doing some exercise videos for people with M.E. Usually we’re just told to do Yoga or Pilates or just some gentle stretches. Yoga and Pilates are too much for my energy levels, and while stretching is all well and good, it’s not increasing my strength.

So I have in mind what I want to do and how I want to do it but, as with most of my bright ideas, the actual “doing it” part keeps being delayed. I want to be very careful and very precise about what I say and do, so I want to write a script out for it. I also don’t have much space in the house, so I need to figure that out. And we all know that nobody watches badly framed, poorly lit videos, and I really want these videos to help people so I need to make them good.

Maybe I’m just scared that whatever I produce will never meet the standards of the image I have in my mind, so it’s easier for me to just not do it…

I’ll let you know if it ever gets done.

Are You Lonesome Tonight?

Are You Lonesome Tonight?

A few days ago I signed up for a study by Bournemouth University that was asking M.E sufferers, who are familiar (to say the least) with social isolation, how the lockdown version differs.

I believe I have a unique perspective on this. I have, in the past, been so unwell that I have been almost bed bound and certainly housebound, and have been weeks without seeing or speaking to another human being. But that wasn’t the position I was in when lockdown started.

First, let me tell you about my experiences of social isolation. Having suffered with depression, anxiety, and PTSD, it has been normal for me to isolate, even before I had to. After working hard on myself and my issues, I still chose to “isolate”, although I wouldn’t call it that. Once I had gotten to a place in my life where I knew who I was and I liked myself, I found that I enjoyed my own company but, very often, other people irritated me. I had some friends and would spend time with them, but was always relieved when I could go home and be by myself again. I went off to college and I liked my college friends very much, but no matter how much they asked, I wouldn’t go to the pub with them after class, I wanted to be alone where I could relax. I preferred my own company to that of others.

The difference with having M.E is that the isolation is not a choice you are making, you are unable to go out and socialise. You begin to realise that commenting on the weather to someone at the bus stop, or saying “Thank you” to a cashier, are social interactions that you took for granted. “Are you in the queue?”, “Is this seat saved?” and “Excuse me, you dropped something” are all moments, no matter how brief, that connect you to another person. When you can’t leave the house, it feels as though a basic human right has been taken from you. You begin to wonder if you’ll be forgotten and just fade away from the world. I think this is how people who live alone may be feeling during lockdown.

I tried, as I’m sure many people have now, to form connections on the internet. I joined support groups on social media, I started an Instagram page, and began blogging, but something that people often forget is that socialising, talking on the phone, writing, reading, even looking at a computer or television screen uses energy and can therefore be exhausting for people with M.E. I know I often couldn’t manage more than maybe an hour of social media at a time without having to take a four hour rest afterwards. Some people with M.E (including me at the time) can also be light and sound sensitive, and get sensory overload as well. This means that seeing and hearing in any capacity becomes painful and sometimes, I would spend hours or even days in a dark room not doing anything except taking my pain killers every two hours. This is a whole different level of isolation that most are not experiencing right now. When it’s just you and your pain, hopelessness very quickly sets in and it’s not unusual to wish death upon yourself as it feels like the only method of escape.

But as I said above, this is not where I was when lockdown started. For me, personally, lockdown was a whole other kind of devastating. I’m sure I’ve touched on these topics before in previous posts, but will reiterate for those who don’t follow my blog. Over the past year and a half or so, I have been researching and experimenting and working on getting better (with the help of my partner). I have been self-monitoring (heart rate, pain levels, other symptoms etc.), pacing, switched to a keto diet (monitored my ketone levels, macro intake, and weight regularly), employed G.E.T (Graded Exercise Therapy), and very slowly got to a point where I was well enough to walk without my cane, learn how to drive, work through my final year at university and get 2 part-time jobs. I was ready to graduate with excellent grades then go straight into a well paid, progressive career. I was right on the brink of achieving what I’d been working towards for the past 5 years, and I was so ready to start my new life, when the virus hit. My graduation was taken away, I never passed my driving test, and because I am immunocompromised, I could no longer work and barely left the house. Even opening the door to the delivery guy, I feel like I’m putting my life at risk. My health began to decline as I was unable to continue my exercise regime, certain foods became difficult or expensive to obtain, and stress triggered flare-ups. Sometimes it feels as though I’m always fighting and can never catch a break, but more on that in the next post.

I am luckier than others in that, I live with my fiancé, who is also home with me all day, his parents drop round to bring us food and make sure we’re okay (from a safe distance), I have a best friend who’s always on the other end of the phone, and I am still well enough that I can use the internet comfortably for many hours on end. I have felt grief for the life that slipped through my fingers, fear of the virus and what that could mean for my fiancé’s and health and mine, frustration at not having access to things that had become part of daily life, and irritation at how the country is managing the situation. Maybe it’s because my current situation has me surrounded by people, maybe it’s because I’ve learned that being alone isn’t necessarily bad, maybe it’s because I know what true loneliness feels like, or perhaps it’s a combination of all these things, but I have not yet felt isolated, I have not yet felt lonely.

Everything Happens for a Reason

Everything Happens for a Reason

I am a person who believes that everything happens for a reason. I have to with everything that has happened to me. If I didn’t then the universe is just cruel and unfair and what’s the point in struggling against the tide? But in stead of hopelessness, I chose to believe that, although I may not know why, and may never know why, the things that occur in my life have to happen in order for some other event to happen that creates balance in the universe. This belief brings me peace of mind and allows me to carry on trying when everything is telling me to give up.

5 years ago I went back to college to do an Access course so I could go to University. Halfway through my college course I got a very severe flu-like illness and never fully recovered. I got M.E. I was still able to complete my course (just about), but was unable to get the work experience required for the University course that I wanted to do. I was rejected from all four of my University choices and left pretty distraught. I was on the verge of giving up when my favourite University offered me a place on a different course. It wasn’t what I wanted to do, but it was close and it could lead me to what I wanted to do, so I accepted and went to University.

1 year of that course and my health had deteriorated to the point where I was almost completely bedbound. I was still managing to get the work done (and was getting good grades) but my tyrannical course leader said that if I didn’t show up for class then I would be kicked off of the course. If I was kicked off of the course then I would be kicked out of my campus accommodation, making me homeless. I somehow managed to get a meeting with the leader of another course who said he’d be delighted to take me on. I ended up loving that course and that department and they supported me with my illness so I was able to graduate this year with excellent grades.

If I had been accepted onto the course that I originally wanted to do then I wouldn’t have wasted a year on a terrible course and I would have graduated last year and been in work this year when the virus hit. And what was that course that I wanted to do? Child nursing. Yep, if I hadn’t gotten M.E, I would currently be a Nurse in the NHS right now.

Just saying… everything happens for a reason.

Dancing In The Streets

Dancing In The Streets

To listen to me read this blog post, please click here: Reading “Dancing in the Streets”

Not many people know this about me, but I love to tap dance.

It started when I was about 7-10 years old and I took up tap and modern dancing. I loved the rhythm of it and the way I could move my foot in a particular way and it would make a noise. I also find the tapping sound itself very pleasing, like a round of applause for yourself.

I was a pudgy child and my dance teacher let me know it. She said I “bounded across the stage like a heffalump”. I gave up dancing and that sentence haunted me while I developed anorexia.

As an older teenager and young adult I often thought about taking it back up again. I really did love it and missed it a lot but my low self esteem (perpetuated by my family) prevented me from pursuing it.

Eventually I decided it was time I did something for me. That was when I bought these shoes and started going to lessons once a week. It made me very happy but my self esteem continued to get in the way then finally PTSD stopped me going.

I put a lot of effort into recovering my mental health and just when I started to feel like I was a person again, my physical health kicked me in the metaphorical testicles. My tap shoes went away and every now and then I’d pull them out, open the box, stroke them, sigh deeply, maybe cry a bit, then put them away again.

Today, I found them while going through some boxes and the feeling I had when I opened the box was so different. I lifted them out and examined them closely, all the little scuffs and scratches, and I smiled. Tap dancing no longer feels like a lost love that I’ll never see again.

I plan to take up tap dancing again once I’m driving (hopefully early February). Not having to rely on busses makes more time and places available to me, and my health is no longer an issue. I can’t wait to get started again. I can’t wait to do what I love without fear.