The Loss of the Familiar

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.

Cane and Able(ility)

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?

What’s in a Name

What’s in a Name

I’ve been thinking a lot recently about what it means to be “disabled” and whether I would/should classify myself as being so.

Although I do walk with a cane, I am able to walk without it. With it I can walk safer, faster and longer but I don’t technically need it to walk. There have also been times, when visiting a place that requires lots of standing around and looking at things (museums, art galleries, aquariums etc.), when I have requested the use of a wheelchair. Again, I could stand around and look at things, but using the chair means I have more spoons for later. I also use access lifts when my legs are tired and sit at the front of busses to reduce the chance of falling on my face.

I always defined disabled people as those who were UN-ABLE to do something “normal” without assistance. I don’t feel as though I fit into this category because although I do use assistance, I’m not reliant on it. However, I’m not as able as “normal” people so I feel I need a new definition.

I started to think about real life situations in which I might/have call(ed) myself disabled. With my friends I humourously call myself a “cripple” to excuse all of my shortcomings regardless of whether they are related to my M.E or not. When requesting a wheelchair it’s never said but a disability is implied by the cane and assumed by staff. Recently I have had to ask delivery people to be patient after ringing the doorbell as it takes me some time to get to the door. When I really thought about it, I realised that instead of classifying myself under the umbrella of “disabled”, I tend to refer to a particular aspect of my illness (I can’t walk far/stand long, I have poor balance, I get confused sometimes etc.) or I allow my cane to speak for me.

So why does all this matter? What does it all mean? Nothing really, I’m just musing over the labels that society uses and how I think of my new self.

Grant Me The Serenity To Accept The Things I Cannot Change…

Grant Me The Serenity To Accept The Things I Cannot Change…

…the strength to change the things I can, and the Wisdom to know the difference.

I am back at Uni for my second first year. My first first year was failed because looking after myself became more important than passing a course I didn’t enjoy doing anyway. I have been housed in a handicap accessible flat with a seat in the shower, hand rails, and a lowered hob and sink in the kitchen. I was ecstatic to discover this as it meant that looking after myself would be so much easier than it has ever been before and I could therefore put more energy into actually studying. The flat is old though and definitely needs updating, but I’m not complaining since the benefits massively outweigh any of the insignificant issues I may have.

Today was the Freshers Fair. It’s the day when all the clubs, societies, sports groups and local businesses set up stalls to try and entice students to sign up to their thing. Last year I was dealing with anxiety levels that made crowds terrifying, but I pushed myself to go anyway because I had such lofty goals for myself and wanted to sign up to all of the things. This year I remembered how much I enjoyed it last year, but forgot to consider how much my health has declined since then. This year I had to manoeuvre through the crowds with a cane. This year I found myself looking at stalls and thinking how much I’d love to do that but, knowing that I am not capable, having to walk on by. Every stall I passed made me slightly more depressed. I can’t even take part in medical research because they need “young, healthy specimens”. I went to the library to distract myself away from crying, because at least I can still read… for short periods of time at certain times of the day assuming I’m not being badly effected by ‘brain fog’. I went back afterwards to sign up for the things I had previously decided I was going to do. I joined the Biology Society to facilitate my learning (I’m studying biology), The Pagan Society for religious support (I’m a Wiccan), The Sustainability Society so that some days I may be able to work on the allotment and the Sign Language Society since I’ve always wanted to learn but never had the opportunity to do so.

I compare my past self to my current self more often than I’d like to. It depresses me because even though I know I have to accept my limitations, there is always a part of me that resents acceptance and equates it to weakness. This is particularly annoying because when I think of my current self without the comparison, acceptance comes naturally and I am excited by things like living in a specially adapted home.

So here is the daily challenge to my mental health; accepting the change that brought about my limitations and learning to live within them, identifying the things that I am still able to do and pursuing them while disregarding the voice that tells me I’m useless, and learning how to differentiate between the two effectively.

Changing the Meaning of "Can’t"

Changing the Meaning of "Can’t"

Before I was ill there were things that I could do, things I couldn’t do and things I didn’t want to do. If something was requested or required of me, it would fall into one of these categories and I would act (or not) accordingly. This is normal for most people I think. Some people may say “I can’t” when they actually mean “I’m afraid to try” or “I don’t want to find out if I’m able”, and I have been known to use these meanings before as well, but now, I find that “I can’t” has found a new meaning.

After two years, I am fairly confident in my knowledge of what I can and cannot do. Sometimes I will test the waters just in case, because I don’t want to be the type of person who sells myself short for lack of trying. However, there is now a grey area between can and cannot that I refer to as ‘payback’. It means that I can do the thing, but I’ll pay for it later (most commonly the next day, or for the next two days depending on the strenuousness of the activity) in exhaustion and/or pain. Some of these things I will do anyway because I consider the payback to be worth it for the experience, for the sake of joining in or simply because I want to still be able to do certain things for myself. But this is when and why it confuses other people.

To avoid having to launch into an in-depth conversation about how the ‘payback’ system works, which often leads to having to explain how the illness can vary from day to day and then sometimes a description of my symptoms (all of which takes a lot more energy than I have to waste), I will simply say that I cannot do a thing. In this situation, “I can’t” actually means “I’m not willing to suffer the payback for this activity”. But without the background information, most people will take it as it is usually meant and will then assume that you are always at this level of frailty. Therefore, in times when you say “No thank you, I can do it” they think that you are being brave or pushing yourself too hard and try to force their help on you anyway. Or conversely, they will see you doing something that seems to be more difficult than the thing you said you couldn’t do, and think you are using your illness to get out of doing things you don’t want to do. Either way, they consider you to be lying, either in the first place or in the latter.

I suppose they can’t be blamed for making these assumptions since I am the one who has chosen to deprive them of the information that could provide clarity to the situation, but I just wish that people would assume in stead that I am the person who knows best what I can, cannot or should not do and take my words at face value even if that seems to contradict what they think they know about me.