First Time Out In The Wheelchair

This week I went out in my manual wheelchair for the first time half being pushed because I live on streets with uneven pavements (which I’ve learn’t as long as the pavements straight but not if there are any bends!) and I still can’t get myself up a drop curb. I thought I’d write about some of the things I’ve learnt from the experience.

  1. My arms are stronger than I thought they were. I knew my arms had better function than my legs. I trust them more and can feel them properly. But I genuinely thought I’d only manage self propelling 5 feet on a v flat easy surface before they just gave up.
  2. Why can’t all pavements be level?
  3. People were a lot nicer than I expected. I didn’t encounter any Karen’s on this trip.
  4. Can people please put signs for COVID entry and exit sides at a wheelchair users eyeline before they have to choose a side of ribbon to go on.
  5. Can we have counters at banks at a height that is more accessible?
  6. Sometimes people do expect you to try and weave around them which is interesting as a new wheelchair user on a busy high-street. Was definitely scared I may run someone over at these points.
  7. I didn’t feel like I was about to pass out or collapse as much, I could feel my legs and was much less grumpy and more chatty (so clearly it’s doing it’s job or atleast half the job)
  8. The skin on my hands, my wrists and my shoulders surprisingly survived but there were deffo a couple of finger dislocations!
  9. I somehow ended up with a bruise on the inside of my upper arm? (EDS skin)
  10. I’ve come a long way in accepting myself since that time last year I had to be wheeled around A&E in a chair.

The advice a can give so far. The practicalities of navigating pavement in a manual wheelchair are a lot harder than you think and you have to go a lot slower than you think or even want to if the ground uneven (Maybe not for the seasoned manual wheelchair user). If you think you need to use a wheelchair you probably do need to and don’t let anyone tell you otherwise.

Pacing is neither cure not effective management. It’s hard to perfect and to justify.

Pacing is what you are told to do with most chronic illnesses that cause fatigue. Pace your activities so you feel as well as possible, your condition stabilises and hopefully start to get better. With ME this is basically all we have and it’s not enough. Most of us don’t really get any education by our medical professionals on how to pace and some get dangerous advice. Pacing is a word open to much ambiguity. When should I stop? How much should I do? When should I rest? Although on one hand that’s positive because rigid timings kill all joy and cause a lot of stress and anxiety it’s hard to know whether you are just “being lazy” as people often confuse ME/CFS with or “scared of activity” leading you to test your limits on a better day/week just to prove otherwise…

Because ME has the hallmark characteristic of Post Exertional Malaise or Post Exertional Neurological Exhaustion which tends to hit between 24-72 hours after an activity but can be longer if you are just running on adrenaline which happens to me all too often.

Yes there are warnings signs as such. For example me not being able to feel my legs properly and feeling like I’m going to collapse but that doesn’t necessarily mean I’ll get PEM from that activity.

Then the PEM hits, increased head pain, facial pressure, back of head pressure, dizziness, brain fog ect. Sometimes I recover fairly quickly. Other times it can take a month to start getting better.

If you start feeling better you think you can do something or should be making use of that time.

It’s hard to rest on a good day just to prevent consequences. If you’ve been ill for a while you want to go out seize the day, make up for that time lost being in bed, barely able to function.

And even if you think your doing this successfully the PEM can still come on. Either because you overestimated yourself or just because pacing isn’t a perfect science nor is it all in our control.

We could get a virus, it could be that time of the month, have a bad nights sleep because someone decides to start drilling at 8pm and doesn’t stop till midnight or symptoms could keep us awake. A stressful situation could arise.

And we go backwards even if we were pacing perfectly.

Sometimes I just say “Fuck it” to pacing.

Either because I want to live my life or I feel pressured because people with other chronic illnesses seem to just be able to push through unbelievable things and I’m just not trying enough.

Now this never ends well. Although I can push cognitive activity without getting too much worse if I’m laying down I can’t with physical activity.

When you want something so much it’s hard to not give it your all. It’s hard to remind yourself that ME is different to other chronic illnesses in that doing too much has often disastrous consequences.

Pacing is hard and impossible to do perfectly. I’ve had people tell me I need to pace better in order to work not understanding that my level of illness makes pacing and being in the office 5 days a week impossible.

Don’t tell us we should pace. We already know that.

And if we aren’t pacing I can reassure you that it’s because we really really really want something or need something or because we just want to spend time with loved ones.

On Ableism becoming a wheelchair user

I made the decision the other day to get a wheelchair. It’s a decision I really should have made years ago but I was too scared and I could walk okay when I needed to…. so it was fine right? I mean not really but it’s hard to come to the realisation that you need a aid that many people see is only for people who are paralysed or otherwise literally cannot walk when you can. Adrenaline will keep you on your feet it just really hurts, the pressure in your head gets exponentially worse and it cases payback which limits your ability to do other things. It’s also hard to justify needing a wheelchair when you can climb. I don’t know why because climbing and walking are two completely different types of movement and your able to sit on the mats and rest inbetween.

It’s scary anticipating neighbours simultaneously seeing you walk to the car to go to your nans or the climbing wall or wherever else one goes in the car, but go out in the chair to go to town or the doctors or wherever once I have built up the ability to self propel I may go on my own.

There’s definitely a lot of people my parents included who don’t understand how chronic illnesses fluctuate. If I pace myself okay I can function and with my ME feel okay. Not healthy person okay but ME/CFS okay. Like the day I’m writing this. There’s some inner energy but the symptoms are still there. With my EDS yes my joints would be better if I could get myself more conditioned by climbing more but even then some days they are worse than others. Some days I can’t go into the freezer without partially dislocating a shoulder, others I can.

There’s also a lot of people who think people in wheelchairs somehow also have an intellectual disability – like we can’t speak for themselves.

And the awful “wheelchair bound” no for me it would be some freedom outside of the house with less payback and I know others feel that way.

It’s difficult navigating spaces that aren’t really made for us but it’s better than being stuck in the house.

And that. That would be amazing!

Does anyone else use a wheelchair for certain outings? What ableism have you faced?

On Severe ME….

This week is severe ME awareness week. I’ve never had severe ME and right now I would say I’m moderate – meaning I’m mostly housebound. I leave the house maybe once or twice a week for essential visits – i.e the doctor, the shops if I need to and that takes a lot out of me. I don’t work right now and when I was working from home it was brutal. But work like activities are done from a mixture of bed and desk, depending on the day and if I want to handwrite anything. So this is an outside perspective.

Severe ME is brutal and entirely distinguishable from the more mild forms. Some research even suggests that some people with ME will never get severe ME no matter how hard they try to push through but others are more predisposed to it.

Severe ME is being largely bedbound. It’s not fun. You may ask how people with severe ME spending all this time in bed. It’s not a lot of what you may expect. TV, books and work like activities. Instead it’s often laying in silence. Eye mask, ear defenders, a dark room. With nothing but your mind to keep you occupied. You can’t move and any movement feels like it’s draining you even further. You may have seizure like shakes, migraines, shooting pains throughout your body, numbness and pins and needles.

Even a shower or a visit from a friend or family member can give excruciating PENE (Post Exertional Neurological exhaustion) which lasts for a week.

You may need help to get to the bathroom or not be able to get to the bathroom at all.

In very severe ME you often need to be tube fed or reliant on TPN.

You have such a low activity threshold that just living can drain you further and cause deterioration. Especially if you aren’t in a quiet enough household or area. Or if your curtains don’t black out all light.

You may ask how you get severe ME. This is in one of two ways usually

1. You get a virus or another trigger and start out with severe ME

2. You push to hard – either on your own accord or all too often by pressure from doctors claiming you should push through the pain, or have inflexible graded exercise therapy. You listen because you too are ill informed about ME and you will try anything to get better.

Although some research suggests some people will never get severe ME and I think I’m in that category no one is “immune” as such and as a general rule of thumb pushing through your symptoms too much will result in deterioration.

This is a real biological illness and the most convincing examples of that are in severe ME. Lots of these patients aren’t depressed although I wouldn’t blame them if they were as it can be hard to maintain mental health with such a life limiting and misunderstood and often disrespected illness.

One doctor said to a friend “you get depressed and then you get deconditioned and end up bedbound”. Although for some this may be true this doesn’t reflect the majority of the ME population. You don’t end up bedbound because you decondition. You decondition because exertion worsens symptoms and sometimes it’s not even deconditioning. Your muscles just refuse to work at times. I’m there all too often. Waking up with paralytic exhaustion and often having drop attacks.

We need to help those with severe ME. Right now many of them are missing from the world, missing from medical care, missing from friends and family. We don’t know about the struggles they have and the help they need because many are too ill to advocate for it.

It’s never enough

I always feel like I’m not enough. Not good enough, not smart enough, not trying enough.

Sometimes it’s in the back of my mind other times, if something triggers this.

Someone doing something amazing whilst I feel I’m sitting there stagnant or going backwards.

Rejection upon rejection upon rejection.

Waiting for emails. Emails of yet more rejections or hopefully good news.

Scrolling down linkedin or legal insta to find everyone getting training contract offers when you have nothing.

Everyone else having confidence to start various initiatives and you not.

Because who would care? Who would help?

People say you don’t network in the right way.

You can’t maintain relationships with people because you pushed all your friends away in the second year of university when you had zero mental health.

You are just simply not enough.

I don’t know how much of this is my poor self esteem as a result of never feeling heard as a child. At school, by my family. A result of emotional neglect/abuse. Or how much of it is a result of being chronically ill and when your chronically ill society expects you to be extroadinary.

To reach goals that most people don’t reach and be an inspiration.

If you don’t your just lazy. A burden on everyone.

It doesn’t help that I genuinely want to reach said goals.

Personally I think it’s a combination of the two causing my feelings of never enough.

I already push myself so much to do things and to function and to live life as close to how I want it as possible that when I see other people meeting standards that I expect of myself I feel like I’m not enough. People say I should do more or atleast insinuate it but there is no way I can fit more in.

I need to try and climb as it’s the only exercise I can tolerate and being conditioned makes a massive difference to my pain levels. It also gives me life.

I’m leaving my job but up until said point I am having to drag myself through 8 hours a day. 8 hours where the pressure in my head feels unbearable, Where my vision will start to fade on sitting up and where the brain fog is so thick that I don’t really trust myself.

I’m doing law things alongside.

Moving home to try and take care of my health before I start my LPC.

I can’t fit more in.

I find it funny that we are expected to be inspiarations but if a healthy person got my symptoms for a week it’s okay for them to do the bare minimum.

Why is this? Why has society developed in this f*cked up abelist way? I know I’m not the only one who suffers because of it, so if you do to you are not alone and you are enough.