Why I 'pimped up' my disability aid

how I am learning to come to terms with my disability and the consequences of a few hours of 'normality' with a friend... (plus two poems because me just writing would be boring)

A picture of my rollator wheelchair which has been pimped up with tattoo artists stickers in an attempt to make it look less like an old people’s appliance or a disability aid. The rollator is parked in my favourite spot, right beside the River Mersey near to where I live.

Regular readers of Poetry and Tea will know that for the past 4 1/2 years at least, I have been living with a chronic illness called ME/CFS which means I am fatigued daily, even on the days when I wake from a fairly decent night’s sleep (waking less than three times is a win!), I also experience a fair amount of pain and gastrointestinal issues (thanks IBS!) amongst other symptoms. As a result of the ME/CFS worsening over this last year, I have found myself dealing with something I never imagined for myself, that is ‘being disabled’ and consequently learning to accept this disability and all it has brought with it, using mobility aids and giving up working being the two most major factors in my life this year. Despite all of this I struggle to believe that I am a) really ill, and b) disabled, often gaslighting myself into thinking I am making the whole thing up and trying to ‘push through’ which ultimately has only led to the deterioration I am experiencing now.

Before I became ill I was fairly healthy, and active, I was a runner, and had only a few months earlier completed a half marathon and loved long distance walking, I had also lost a lot of weight (31kg) and was finally getting used to being a slimmer version of myself and doing a job I enjoyed. Now, thanks to the ME I have had to stop running and exercising (even if I wanted to, I couldn’t), and I have regained the weight I lost, and more (thanks mostly to inactivity!). However, just because you now can’t do something, doesn’t mean you don’t want to, and therefore learning to accept this new way of life is something I have really struggled with, I am desperate to be ‘normal’ again and do things ‘normal’ people do! This isn’t helped much by those few people in my life who ‘don’t do sick’ and won’t admit how much the ME has taken from me, or how much it limits me on a daily basis.

ME and my Great North Run half marathon finishers medal from 2019, just before I got sick.

The definition of ‘Internalised Ablesim’ is when a disabled person absorbs the opinions and viewpoints of an ableist society and is definitely something I am trying to work on in myself, but it is hard. I feel guilty for being sick, even though it wasn’t my fault that I got sick, I feel sad that my husband has now effectively become my carer, making sure all the household jobs get done etc. and I have this deep need to want to prove I am not sick by doing all the things my friends do, and not miss out.

I currently use a wearable device called Visible which monitors my heart rate and HRV and helps me to pace myself better, if I limit myself to using a set number of pace points per day and try not to over-exert as much as I can. Some days I stay within my points, as long as I barely do anything, lots of resting, scrolling social media, catching up on box sets and keeping up with reading Substack and doing some writing; but on others I burn through points very quickly and experience a lot of symptoms resulting in post exertional malaise (PEM/MECFS crash) on the day(s) following. To minimise this as much as possible I have accepted that I need to use mobility aids to slow me down and make taking rests easier (and stop my heart rate from spiking too much).

Photo of my legs with my walking stick in frame

I began using a stick a year ago and found it really helpful, I got my head around it reasonably quickly and became used to taking it out with me wherever I went (I don’t need it around the house as there is always furniture to lean against and I have limited the amount of time I am on my feet, thanks to my fabulous hubby!). A few months ago, after an uncomfortable walk to an appointment, I decided to get a rollator wheelchair to enable me to stay slow, and also be able to rest when I need it, and also enabling my husband to push me when I am in severe pain/fatigue. It has taken a lot of talking to myself and journaling to get me to accept that I needed this and, even so, I had to pimp it up a bit and make it look less like an old person’s appliance or a disability aid (see photo at top of post). This summer I even hired a mobility scooter to help me move around a festival I attended and I found it so helpful, and it certainly reduced the crash I would have experienced when I came home. Deciding to get a mobility aid is a big decision but one I definitely think is worth considering, and whatever aid you choose is the best for you will certainly improve your quality of life. I will be looking into getting a powered wheelchair at some point hopefully, but for now I am managing as I am with the rollator.

Photo of me sitting in my rollator (before I pimped it up) taking a photo of myself in a mirror in a stately home.

This weekend I was filling in some forms to claim benefit in the UK, in order to do this you have to tell them the ways in which your condition limits your health, and to what extent you are disabled, this was an eye opener for me as a recently disabled person, and I found as I went through the process (and thanks to the honest talk of my husband) that I am actually a lot more disabled than I was giving myself permission for. This is something I need to get across to people when invited to something or when I feel like I ‘should’ be doing something that other people do, but most of all I need to work on accepting it for myself!!

I went out with a friend on Friday for a little slow walk round the museum, some food and then finally to an interactive light show in the beautiful St George’s Hall in Liverpool which had us lying on bean bags listening to classical music (Vivaldi’s Four Seasons), the latter part of the day was perfect for me, but before that I used almost 3 times as many pace points than I needed to and risked experiencing a crash once again. It needs to stop, I need to stop putting activity and over-exertion before my health.

My heart rate from the Visible app while I was trying very hard to be a ‘normal’ person for a few hours. I used up almost 3x my pace points for the day.

I wrote this poem on Friday morning when thinking of how to not get into this boom/bust cycle and accept my disability for what it is:

I need to slow down
Learn to say no
Adapt and change
Prepare myself for missing out
Saying sorry
Letting people down
Except I don't
I keep going
Deluding myself
That having a life
Is more important
Than healing
Than resting
Than being alone
I push through
Refuse to pace
Ignoring the data
Allow my body to suffer
The consequences
Of my foolish actions
Until when?
It gives way? Stops?
Someone make it make sense
Make it go away
Help me learn how to live
In a failing body

and I wrote this one afterwards, when the symptoms of the inevitable crash finally hit me:

My teeth are clenched, once again
My fragile neck, spasms
Shoulders ache, all over
Fatigue takes over my entire body
Piercing pain spilts my head in two
As every sinew of my body drowns in pain, I realise
Post exertional malaise has entered the room

Thank you to

Hal Walker

,

The Disabled Ginger

and

Tamsin Chennell

for sharing their very vulnerable posts and notes over the recent days which have really inspired me to share my story some more, and learn to accept myself and where I am more, and try to get rid of the internal ableist talk I keep giving myself!

Thanks for reading, I would love to know what you think

Lisa x