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

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

Read Part 1 here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Clevermind

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.

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.

The Loss of the Familiar

B.L (Before Lockdown) I was taking one of my many busses to one of my destinations. There was an elderly man sitting at the front with a walking stick. During the journey, the bus hit a bump, or halted suddenly, and he dropped his stick. Someone sat nearby immediately jumped to his assistance and returned the cane to its rightful owner.

It made me think of all of the times (and there were very many of them) when I dropped my cane. Sometimes people would help and sometimes they wouldn’t. Usually someone nearby would ask “Should I get that?” or “Do you need help with that?”. There’s nothing wrong with that, in fact I would probably prefer that they ask that just presume, that’s not the point of the story.

The point is that I saw something mundane, even inconvenient, and reflected on it with nostalgia. In that moment, I missed my cane. It had been a part of me for such a long time that, even though I was glad for the freedom, I missed having it with me. I talked about it before as being like an extra leg, a part of my being, my body, my person, so even though I was whole and didn’t need it anymore, it still felt like a part of me was missing.

It was a strange sensation and difficult to explain, I guess I’m just saying that we become comfortable with the familiar and whether that thing is a positive or negative part of us is irrelevant, we still miss it when it’s gone.

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.

Cane and Able(ility)

Before I get started on this month’s post, I first wanted to mention, for those of you who can’t be bothered to read to the end, that I have started up a new Instagram account (@m.e_and_me_experience) to supplement this blog. I use it to recored my day to day experiences in picture and video form. Small, bitesized snippets can be easier to digest, especially if you suffer with brain fog, as I do. So please go and check that out.

I know I’ve mentioned in the past that I use a cane and sometimes a crutch to get around, but I don’t think I’ve ever talked about how I feel about that. So that’s what this post is all about. Some people find it difficult admitting that they need a mobility aid to walk, whereas others may like the attention that having a cane or walking stick gets them. Personally, I didn’t really think about it too much when I first started using it. My father is disabled, which is something else I know I’ve spoken about before, so he uses crutches or a wheelchair to get around, therefore, the idea wasn’t that foreign to me. When I started to realise that walking was difficult it seemed natural to use a stick to help me. At the time, I was going to college and found that, during the walk home from the bus stop after a long day, I would hold onto walls and railings in order to help balance myself and get myself home without collapsing. I felt very unstable on my feet and my legs felt so weak that I thought they would buckle under me with every step. So one day I just asked my dad if I could borrow one of his crutches to make the whole thing easier. It helped and I never questioned it. As my health improved, I decided that the crutch was very encumbersome and that I would probably get by just as well, or better, with a cane or walking stick. I found a cheap one online that I liked the look of and used it when I felt that I needed to. For a while my health was that much better that I didn’t need it at all, but I would always carry it in my bag just in case (it was foldable). It was nice knowing that it was there if I needed it. My illness progressed and I started to use it more, then I began exploring other options and opted for a cane that was sturdier and had a more comfortable hand hold. (I still have my first cane though. It has a different type of rubber foot on it now that is better suited to uneven ground and I’ve dubbed it, my “off-road” cane.) I also considered buying a walking frame with a seat but didn’t have the space for it in my flat and wasn’t sure how much I’d use it. Currently, my health is starting to get that bad that I am considering buying a wheelchair. This is something that I intend to explore during the summer when I have more time to test some out and get used to using it.

Now, I’ve explained how the decision making process came about, but I also want to get more personal about my feelings towards the cane. When I first started using it, I felt a little embarrassed, but only in the same way that one would be self-conscious about a new pair of glasses or heels that are taller than you’re used to. I was very aware of the movements that I was making with the cane and my feet and sometimes wondered how it would look from an outside perspective to see somebody so young using a cane. Sometimes I was concerned that people would think I was making a strange fashion statement. However, I was always grateful for the extra ability and independence that it gave me. I was still able to get out and about and do things, or at least more things then I would be able to do without the cane. I wouldn’t say that I loved it but I definitely had positive feelings for it. As I became more used to it and more confident using it, it became like a third leg. And that’s mostly how I think about it now, I usually forget that it’s there. The motions and movements that I make with it are second nature now so it feels as natural as walking. The only times that I really think about it is on the days when I’m not doing so well and I have to lean more heavily on it, and in those cases I’m only more aware of it because there’s more pressure on my hands and arms, I’m equally aware of the weight of my body on my legs and feet. I’ve never had a prosthetic limb but I imagine it’s a similar feeling. I don’t think of it as being separate from me even though I have no feeling in it and even though it is not physically a part of me. It feels like it’s a part of my character and it is very much a part of my identity. Without it, I feel like I am missing something.

How do I feel about my cane? How do you feel about your leg?

Healthy Mind, Healthy Body

B.M.E (before M.E) I suffered with varying degrees of anxiety and depression and (eventually) sought professional help to cope with those issues. During this time it was concluded that my mental health issues may not be circumstantial and that attempts at “curing” me would probably be unsuccessful. I was therefore taught an array of managing techniques and healthy coping mechanisms so that my long term problems would be less problematic and I could live a more “normal” life. Over all I had roughly 4 years worth of counselling and psychotherapy which included talking therapies, C.B.T (cognitive behavioural therapies), mindfulness, visualisation meditations, proper diet and exercise regimes, the importance of routines and how to maintain them, sleep hygiene, emergency coping strategies etc etc etc. I got really good at looking after myself and became happy, gained confidence and began planning and working towards a future that I wanted for myself.

A.M.E (after M.E) I gained a whole host of emotions that I’d had little to no experience with before. Some of the skills I’d learnt were transferable, some were not. Having used mental health services before and had a positive experience with them (in the end), I wasn’t afraid or hesitant to seek further help. I was however, preoccupied with getting to grips with and managing my physical symptoms and reorganizing my life. So it was only really when it started to effect my relationship that I decided to actively look for help. My GP referred me to Talk Liverpool, who seems to be the umbrella company for all of the mental health services in Liverpool (I may be wrong about this but it’s the impression I’ve come away with). I had a few telephone interviews and had to repeat myself a few times to a few different people and was then put on a waiting list. This was at the beginning of the summer and after a few weeks I decided I had better look for some other kind of support to keep me going in the meantime. This is something that Facebook is good for. I joined a few support groups and was immediately glad that I did and wondered why I hadn’t done so earlier.

Being in a support group provides you with a community of people who can empathise in stead of sympathise and I can’t explain enough how crucial that difference is. Any time you have any feelings about anything, you can post it and within minutes get a dozen replies from people saying “I understand, I feel this way too” but also “This is what helps me” and “Have you tried this?” from people with real life experience of what you are going through. In turn, you find you’re able to give similar responses to other people and feel like the care has come full circle. If I knew when this all started how helpful these groups could be, I would have joined immediately.

Anyway, a few more weeks passed (we’re now into September and I’m back at uni) and I got a call back. I was re-interviewed and re-assessed and I repeated again that I was looking for a talking therapy since I’ve been through a number of different types of therapy before and knew this would be most useful. I also stressed that though I have had anxiety and depression in the past, I was currently seeking help for the struggles that come with living with a chronic illness. The lady on the phone (I’ve forgotten her name) said there was a particular pathway that has to be completed and that I’d have to complete an online course before I’d be able to see a real person. She said she’d ask her line manager if I could skip this part but called back a week later to say that wasn’t possible. So I began the 12 week online course that explained the importance of a good routine and how insomnia can be beaten by winding down before bed and how exercise releases endorphins and going for a walk in the sun can lift your mood and how to be mindful of negative thoughts and so on and so forth.

About halfway through this course I got a call from a different woman who was part of the same team. She said she was on loan from Manchester and that she was checking in to see how it was all going. I told her that the online course I was on wasn’t really suitable but that I was willing to follow through with it if it got me to where I needed to be. She asked me to elaborate and when I did she said “Oh, we have an online course that is tailored towards people with chronic illnesses. I wonder why you weren’t put on that.” I wondered that too. So she switched me over and said that she’d try to rush me through so I wasn’t wasting my time. She was the first person I’d spoken to who seemed to really be listening to me and believed that I knew what was best for me. She expressed her disappointment that Liverpool didn’t have better mental health services and was apologetic to me that they had let me down. She restored my ebbing faith and I followed the new programme.

A shorter number of weeks after that, she called to check in and said that she could sign off on me completing the course. She said she’d put in the referral for face to face counselling but wasn’t sure how long the waiting list was. In the meantime she’d email me some more stuff on the topics that I found particularly helpful. I think it was roughly 6 weeks before I got a call from “Compass”. They had received my referral and were inviting me to a preliminary interview. I went the following week.

That was a good experience for me. The receptionist had a therapy dog that sat with its nose poking out under the door and made an excited run for it when she went to use the toilet. He was fine, she had a colleague dog sit him while she was gone, but his excitement and cheerfulness was infectious. Then the lady I’d come to see came down to meet me. She smiled, shook my hand and introduced herself, very friendly, then she took me upstairs to the meeting rooms. They were very comfortable, the lights were low so didn’t hurt my eyes, the chairs were cushioned, and when the door was closed it felt very private but not claustrophobic. She took notes as I explained what my problems were, very briefly, and what kind of therapy I thought that I would benefit from. When I was finished, she nodded and said I was obviously very aware of my own needs and that she would work with me to facilitate that. She said most of the people who worked there were volunteers, which was fine for people who didn’t know where to start, but she thought that I would benefit more from a professional, qualified therapist and she would try to arrange that for me. She said there would be a waiting list, as there always is, but all in all I left feeling confident and looking forward to my first session.

I got a call and it was scheduled at the end of last week, at a time that I’d indicated would be good for me, but unfortunately I couldn’t attend because I was unwell. I called to let them know and they rescheduled it for me this week.

All in all, from my first GP appointment where I asked for a mental health referral to last week when I would have had my first face to face talking therapy session, it has taken 7 months. All I can say to that is, it’s a good thing I didn’t have extreme mental health difficulties or I never would have made it through this process, and thank God for online support communities because they are the ones who have supported me while I’ve had no support.

Losing Myself

When you have a chronic illness, especially one as debilitating as M.E, you expect it to take over certain aspects of your life. Where I go, what I do, who I see, and how long for are all dependant on my M.E. We have a one-sided, controlling relationship where I have to check in with it before I make any decisions about my life and it lets me know what I can and cannot do. If I rebel and disobey then I am punished. This is a compromise that I’ve gotten used to and, though I’m not completely happy with the life I’m living, I’ve managed to reduce my suffering by doing as I’m told. The unsettling thing I’ve noticed recently is that, like any unhealthy dependant relationship, it is starting to dominate my thoughts and personality as well.

As a biologist and someone with a scientifically driven mind, I spend a lot of time reading research, journal articles, patient stories etc., looking for treatments, insight, knowledge or understanding, any kind of hope for a way out of my situation. When you spend so much time reading about a particular subject, when you surround yourself with it, it quickly becomes all you have to talk about. I hear myself relating every topic of conversation back to M.E, either my personal experiences or to something I’ve read or heard. I hear people feeling awkward and trying to respond politely. I know that they aren’t interested but it’s the only way I can contribute since M.E is the consuming aspect of my life. Even things as common as the weather (the heat steals my energy and the cold makes the pain worse), how was your weekend (great, I spent it the way I spend every weekend, recovering from the week just passed and preparing myself for the week coming), or if anyone dares complain that they’re tired (you don’t know what tired is! I’d do anything to feel as tired as you right now!). I don’t have hobbies, I rarely go out, I can’t spend time with friends, what’s left for me to talk about?

But my M.E is not a bad boyfriend that I can break up with, or an addiction I can overcome. It forced it’s way into my life uninvited and unwanted and made everything all about itself. It swallowed me up and now, I am more M.E than me.