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.

Live and Learn

Live and Learn

The New Year has rolled in and I feel obligated to mark the occasion. Most people I have seen, have chosen to go one of two ways with this. They either choose to disregard the past year and focus on the one ahead (mostly hoping and praying that things will get better without them having to do anything), or they are complaining about what a terrible year it was and how unfair life is.

I am a realist. I don’t believe in “searching for the good in a bad situation”. Nor do I believe in narrowly focusing in on tragedy because it outweighs any good that has happened. Nor ignoring things just because they are unpleasant.

We live in a delicate web of circumstances. Everything effects everything else. Every situation that arises has been brought about by situations that came before, and will bring about situations after it. Assigning blame, feeling sorry for ourselves, lamenting, or denying will do nothing to change what has come before or where we find ourselves now. What we can do is observe, study, analyse, learn and thereby become better people, better equipped to handle future situations. We can change the way we behave and react and these things will trigger change in our lives. But I digress…

In order to “Review my 2020″, I thought it would be best to create a “Pro/Con” list. This will keep things in perspective and give me a more realistic idea of how to approach 2021.

PRO’s

1. Got engaged.
2. Got a car.
3. Graduated with a 1st Class Degree.
4. My employer was hugely supportive despite me not having worked at the company for long.
5. Was given a secondment so that I could work from home.
6. Had time to decorate the house.
7. Spent more time on hobbies and passions.
8. Spent more quality time with fiancé and cat.
9. Got to know myself better.
10. Haven’t lost anything I can’t get back.

CON’s

1. Was unable to properly start my new job due to being ‘high risk’.
2. Barely left the house since March.
3. Weight increased to my highest ever.
4. Health decreased dramatically.
5. The British public showed themselves to be more stupid and selfish than I thought they were.
6. Was unwell for the holiday season.
7. Have barely seen the family all year.
8. Had driving test suspended several times over.
9. Didn’t get another cat as planned.
10. Increased fear, anxiety, depression.

Dealing with the virus and the way it has changed the world is an unprecedented incident that nobody could have predicted (except the scientists who have been warning the public for years that we were on the brink of a devastating pandemic). I feel as though I was better equipped than most, since I am well practiced in managing feelings of fear and anxiety, I am an introvert and therefore don’t miss the lack of social interaction (living with one other person and a cat can sometimes feel too crowded for me), being a chronic illness sufferer means that I am more in-tune with my body and my health, it also means that I have endured periods of being housebound before (at least I’m still able to get out of bed and move around the house during lockdown), I have studied and worked in the biological field, frequently working under aseptic conditions (I know how to clean my self and my surroundings effectively, and I know which products will kill viruses and which will only kill bacteria, and I know what to look for on products that make such claims. Not to mention the general knowledge I have about how viruses, testing kits and vaccines work, so I know what to believe and what not to believe in the media) and finally because I am a prepper – I am prepared for scenarios where we lose all electricity and running water, I can more than handle wearing a mask and washing my hands repeatedly.

I won’t share all the things that I have learned this year but I have learned a lot, I have changed a lot, and I will continue to adapt to what comes next. All in all, this past year has been true to my general attitude towards life – It wasn’t great but it could have been a lot worse.

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.

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.

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.

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.

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.