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.

New Normal

New Normal

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

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

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

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

Fear

Fear

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


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

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

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

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

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

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

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

I hope you are all well.

Give me Liberty or Give me Death (Trigger Warning)

Give me Liberty or Give me Death (Trigger Warning)

Something happened. I couldn’t walk. For the first time ever, my legs would not take my weight.

The flare up knocked me for six, but when I started to feel ‘better’ again I began to behave normally. Then I needed the toilet, sat up, stood up and fell straight back down again. My legs were trembling and were weaker than they had ever felt before. Sobbing, I had to ask my partner to help me. With one arm around his shoulders and my other hand on my cane I was able to take enough weight off my legs that I could, very slowly, shuffle my way to the bathroom. He took me in but I was far too mortified to let him help me further. I won’t go into the details of how I managed my business, suffice to say that, with great effort and difficulty, I did everything that needed to be done then sat on the edge of the bath to wash my hands. I made it back to the door spreading my weight between my cane and bathroom fixtures, feeling grateful that our bathroom is not a large one, then my partner helped me back to bed. The second I was safely down I erupted with emotion. He brought me pain killers thinking I was in agony, but the pain in my legs was minimal. I cried so hard because I felt I’d hit a new low. Even if I could do nothing else I was always able to make it to the toilet and back by myself. It was the one thing I had and now that had been taken too. What if I had been alone? Would he have come home to find me sitting in a puddle with zero dignity left?

I have been more depressed than usual recently. I have applied to the local mental health team but am at the beginning of a three step programme and a minimum of an 8 week waiting list. So I joined some Facebook groups so I could talk to people who understood and could relate. But I feel ungrateful if I complain too much. Things could be so much worse for me and are so much worse for so many others so who am I to complain?

All I know is that everyday I have this thought; “I don’t want to live like this anymore.”

The Embarrassment of a Self-Inflicted Flare Up.

The Embarrassment of a Self-Inflicted Flare Up.

As I’m sure I’ve mentioned before, the key to managing an illness like this is to work out where your limits are and then live within that range. The problem is that when you get really good at doing this you start to believe that you are better. Not ‘well’ like you used to be, but better than you thought you were and more capable of doing things. If you’re anything like me, you’ll spend most of your time thinking about all the things you used to be able to do, and since I am very much like me, I began to wonder which of these things I should start doing now that I was doing better. So I started exercising.

Before my relapse in November 2016, I had begun training for a 5km run. So in my overconfident state of complacency I downloaded a Couch to 5K app. I didn’t want to run outside in case I collapsed or pushed myself too far and wasn’t able to make it home again, so I would jog on the spot in the living room. I took a rest day between each workout and I was loving all the extra calories I was burning. I felt tired but not unbearably so. Halfway through my second week however, my body retaliated.

The pain gripped my body and dug its nails in, the fatigue clung to me and dragged me to the ground. I was bed bound for a week, and house bound for another. On to week 3 and even now a short walk to the corner shop requires a long rest before and after. It’s a good thing a bought a shower stool recently so I’m still able to wash myself.

I was too ashamed to tell my partner why I was having a flare up. As a person who is always reading, learning and talking about my condition, I should have known better, but my inability to accept my disability caused him to shoulder the responsibility of my chores and my care on top of his full time job.

Shame, pain, fear and hopelessness; those are my feelings today.

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.