Returning to the World

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

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

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

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

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

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

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

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

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.

New Year, New Decade, New Experiences.

To listen to me read this blog post, please click here: Reading “New Year, New Decade, New Experiences”

From what I can tell from my social media pages, most people seem to have had a rough 2019. I, therefore, feel lucky and guilty that I have had a good year. The first half was a little touch-and-go but the second half was the best I’ve had in as long as I can remember. And I plan to make 2020 even better.

TRIGGER WARNING: This post is going to be self-indulgent and a little braggy. If you don’t like reading about other people’s happiness and good fortunes then stop reading now.

There’s no denying that the main reason for my happiness is my improved health and, as mentioned in a previous post, that is almost completely down to my amazing, supportive partner. I spent the majority of my illness thinking about all the things I would do if I wasn’t ill. Therefor, when my health began to improve I began to do as many of those things as possible. My main restriction shifted from energy levels to time in the day, and that is an incredible feeling.

So I guess we should start with my physical improvements. I have talked about this in more detail before so I’ll just highlight my favourite bits. I do yoga. Walking a mile to the shop is not something I have to worry about. I took up running again. Every morning I can get up, shower, brush my teeth, dress, do my hair and make-up and feel ready for the day, not ready for bed. But more than that, we can go out, for meals, to shows, to fairs and fetes, or just for a walk around the park. It’s so good to spend time with the man I love outside of this house. And inside the house I can indulge my inner housewife with cleaning, baking, mending and crafting. I can “waste” energy on doing things that are completely frivolous and purely for my own enjoyment. I feel like I can function normally again and that is such a blessing.

Secondly, this is my final year of university, which for me is the culmination of 5 years of pursuing the future that I wanted for myself. Going back to education as a mature student with anxiety and depression was daunting enough, but to get M.E in the first year of this journey really tested how much I wanted it. In year 2 I was almost completely bedbound but still managed to drag myself through because this really is the most important thing that I have ever done with my life. I am sad and scared that it is ending because it has become familiar and safe, and has helped me to grow and develop as a person. I am also excited to move onto the next step of this process and actually begin living the life I have been working towards. So many more doors will open up to me once this one has closed behind me. I have also done some work experience over the summer which provided me with connections, taken on some part-time work which has given me experience, and given guided tours of the university to potential applicants which made me so proud and happy for the next generation of Biology students.

Self improvement has been a big focus for me this year. Physical improvements I have mentioned, educational improvements too, but I’ve also spent a lot of time on self-reflection and observation. I saw a councillor for a while and she was great. She asked the right questions and got me to focus on who I was and what I can do. Often we look outward to place blame and seek happiness. This year I have learned and internalised the idea that I have no control over others and the world around me, but total control over my own actions. I am responsible for my own happiness and I am to blame for my poor choices or reactions. In this way, I can make my life what I want it. My self-reflection has also lead me to ask the bigger questions too and I’ve revisited Zen Buddhism and listened to the Bhagavad Gita as well as “Letting Go” by David R Hawkins M.D PhD, and “The Madness of Crowds” by Douglas Murray. I also listened to “Battle Scars”, “Break Point”, and “First Man In”, by the hosts of the TV show “SAS: Who Dares Wins”, Jason Fox, Ollie Ollerton and Ant Middleton respectively. I also scattered some fiction in between because even made-up people in made-up situations can teach us things about ourselves. I started a Bullet Journal this year too as a creative outlet and to organise myself, but I also found that it motivated me to be more productive and to enjoy taking time over small details.

My domestic life this year gained a house, a cat and an improvement in my relationship. I don’t wish to talk too much about this as it is not just mine to divulge. My home life is shared with my partner and he deserves his privacy. I will say that I am feeling more like a wife and mother than ever before and that is a warm, comfortable feeling for me. I will be having my 30th birthday this year and I am more than ready for this phase of my life. In fact, I have been waiting for it for a long time but it has been waiting for me to be in the right place and the right time. All the chips are falling into place now and I feel like I am becoming the person I was always supposed to be.

So, to summarise, 2019 has been a year of exponential growth. It has been hard work, exhausting at times, but also enjoyable and so, so worth it. 2020 should continue this trend and although this time next year my life will look completely different, it will also be exactly as it should be.

Happy New Year. Best wishes to all of you.

The Here and Now: An Update

Once more a little more than a month has passed since my last blog post. The main reason for this is simply that although many things have happened nothing big and important enough to blog about has happened. Therefore, this blog post will be a basic update of my life over the past month and a bit.

Rollin’ Rollin’ Rollin’
Since the last post was about my cane, it seems appropriate that I begin with the news of my wheelchair. Every now and then, and far more often than I’d like, I have days where I need to do something but physically cannot. I’ve been thinking recently about getting a wheelchair and I know I’ve mentioned it on here before as well. Recently I had one of these days and it upset me more than usual. So the next day my partner and my crutches helped me to walk a few feet up the road to Ableworld where I’d spotted a wheelchair that I liked previously. I wanted to try it on a bad day to make sure that I’d still be able to use it, and I could. So we bought it and that weekend we took it bowling. I had a little trouble getting on and off of the bus, and I felt horribly embarrassed by that, but I’m happy to know that the chair is there if I need it, so hopefully I won’t have any more of those days where I have to decide whether I’m going to do what I need to do or what I have to do.

Not a diet, a lifestyle change
I have heard a number of chronic illness patients swear that a clean, low carb diet has helped to improve their symptoms. I’m not just talking about M.E here, but a whole variety of chronic conditions from pain and fatigue to migraines and allergies and, of course, digestive problems. A few of that number talked about a book by Dr Sarah Myhill. She believes (as do many scientists at this moment in time) the symptoms of M.E and Fibromialgia are caused by a lack of normally functioning mitochondria in the cells. Without going into too much scientific jargon, the mitochondria are what give our cells energy and if they can’t do that effectively, or if there aren’t enough of them, we are left without enough energy to function correctly. This explains the array of M.E symptoms including not just fatigue but brain fog and a faulty immune system as well as others. She suggests that by eating a keto-paleo diet we can help our bodies utilise the energy we get from our food more effectively. Combining this with proper pacing techniques so that we don’t waste the energy we do have, and supplementing with vitamins and minerals known to aid cell metabolism, we can gain back a percentage of our functionality. Of course, where you start will effect where you can go, she never promises a full recovery, and it is a life-long regime, but considering how many times I’ve heard it works, and the sound science behind it, it’s definitely worth a shot. I’ll leave a link to her website here if anyone wants to learn more: CFS The Central Cause: Mitochondrial Failure
So far (it’s been about 4 weeks) I’ve not noticed much difference in my fatigue, only an improvement in my digestion, but I’ve not been taking my supplements or tracking my carbs so although I have, for sure, drastically reduced my carb intake, I don’t think I’ve entered ketosis.

What’s in your head?
I’ve started seeing a new counsellor with Talk Liverpool, the lady I was seeing at Compass did not work out at all. I really tried to make it work with her, but every session I went in looking for answers and all I got was patronising sympathy. Basically, I would go in and say “this is really hard for me” and she’d respond “wow, that sounds really hard.” It wasn’t beneficial at all. The new woman I’m seeing, Claire, is much better trained. She knows how to listen, empathize, and reflect my thoughts back to me in a way that makes me dig deeper. I’ve just come back from my seventh session and I really feel like we’re getting to the crux of my problems. I am very optimistic.

A new addition
We got a cat! I know a number of chronically ill people take great comfort in their pets. They say that animals can sense when you are unwell or upset and they find a unique way of confident you. However, our new cat, at 2 years old, is still a kitten. As much as I love him and he can make me laugh, he’s more needy than I am. He requires a lot of attention and having him around the house is almost like having a toddler. He gets into everything, he destroys anything that isn’t nailed down, he’s constantly under our feet, and he cries for your attention all the time. I wouldn’t give him up for anything, but he really does try my patience sometimes. So much for a therapy cat.

Two down, one to go
My second year of uni is drawing to a close. It’s been demanding but enjoyable. I’m becoming quite apprehensive about the coming summer. In order to gain employment after I graduate, I need to have real world experience. I planned to get this experience over the summer months but I’ve been trying to contact places since before Christmas and still don’t have anything in place. As a chronically ill person, I know that employers will be hesitant to take me on, so I know I need to have something really special to be considered ‘worth the risk.’ Without any kind of experience, going into the job market is going to be disastrous for me. There are people at uni who can help me with this, but at the moment,  time, revision, and a little bit of pride, are getting in the way of me asking for help.

There’s probably some bits and pieces that I’m forgetting but for the most part you can now consider yourselves updated. I hope to bring you some more meaningful posts soon.

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?

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.