I wanted to bring you up to date on life and the challenges that not only I face but many other disabled people face. I did intend to do a Vlog but I found this is easier for me at the moment.
In November I had a hearing check up. I couldn’t hear with my hearing aids and ear moulds were uncomfortable. I wasn’t expecting to get the result I did. My GP advised the only appointments showing were at a health centre rather than the hospital where I was previously being seen (and who informed me I had to get another referral from the GP as it had been 2 years since the last hearing test) So off I beeble to the health centre and have the hearing test and the results are Profound Bilateral Hearing Loss. Ffs! Like I need anything else but at least I know the level of sound I can or rather cannot hear.
So new ears are fitted and so begins the process of retraining my brain to background noise and how some sounds sounds through a mechanical device. I’m still (3 months on) trying to retrain my brain.
Last week I had the privilege to deliver a short talk (about 30 mins) on my journey, life, experience, however you want to put it, of living with rheumatoid arthritis and disability to a group of new employees at a wonderful charity. I’ve not been particularly well and my pain and fatigue levels are high and poor mobility so Hubby and me looked at the journey and how I would do it in the power wheels. The journey had its good points and some not so good points.
On the London Underground stations which are accessible for disabled people have this sign displayed on the map (keep this in mind for the rest of this part of the story!)
So my journey is planned and I’m aware it will start with a bus as my local station has steep steps which feel as though your navigating Everest. Lovely station staff at the first station help me, second station is level access, sweet! However the station that was at the end of my journey had one of these symbols next to it. As a wheelchair user I took this to mean I could get off the train, level access and exit the station. Not quite. On arriving at Farringdon station this is what I was presented with.
Not only was it not level access it had a gap
That my wheels would not be able to bridge. Thank goodness for a quick thinking passenger who blocked the door to prevent it from closing and the train from hurtling off toward Kings Cross. A station assistant came running down the platform as if his life depended on it and exclaimed “we didn’t know you were on the train! Why didn’t you call ahead?!” I pointed to the accessible sticker next to the station on the map and the reply was “but it’s not fully accessible, I’ll get a ramp”
Ramp is put in place and I go on to do my talk, which went very well. On returning to Farringdon I met the lovely Billy who is a customer service assistant. Nothing was too much. He called ahead to let the driver know, and the stations I would be travelling to. Ramp was got and I wheeled on to the busy train.
This week I have had facet joint injections and sacroiliac joint injections. These help with pain and inflammation in my spine. I’ve had them lots, they’re not pleasant to have and the needles are mahoosive! But, they do help. Only down side is that they wear off and need repeating. My admission time is 12:30 as these are done in theatre on the day unit by my pain management consultant, the Dashing Dr Huntley (I’ve mentioned him before in past blogs and yes he knows that’s what I call him) besides you have to have a sense of humour when you’re naked, face down on the operating table and there’s a man in a lead jacket with a bunch of needles that could be used on an elephant! Anyway I book in and I’m shown to a cubicle. A student nurse does some of the paperwork and is joined by a senior nursing member. I explained that I’m deaf, please face me when speaking, it should be on my notes. The reply shocked me! “ No! You don’t look deaf!” I was and am gobsmacked that it came from a nurse.
The issue of me being able to hear or not while having this particular procedure done is overcome by the fact the theatre team at Queens Hospital are amazing. Colin, the guy who gives me the sedation when I need it to get through the procedure sits by my head and relates everything back to me. We also shared recipes and have a bit of banter. Having this relationship with the medical team makes things a lot easier and more relaxed. It’s a relationship that has grown over the last 4 or 5 years (possibly more) I don’t think the team get anywhere near the recognition they deserve, they are simply fabulous.
I can honestly say that the sacroiliac joints were the worst followed by one of the facets. This is due to the being inflamed, the reason for having the injections in the first place. Picture is me enjoying the sedation as it wears off 😀 In an ideal world these injections would be done every 4-6 months but the NHS waiting lists are long and growing day by day. The doctors, nurses and medical teams are under extreme pressure to meet targets and unfortunately the patients become statistics rather than people.
Living with any long term medical condition or disability means coming up against various barriers and challenges. These are often put in place by the Abled community and their misconceptions. Just wanting to travel means navigating public transport which isn’t as accessible as we would like it, but it is improving slowly. The attitudes of well meaning people with back handed compliments is a daily occurrence. The stereotypical image of a disabled person needs to change and to do that we need to speak out, celebrate our differences as we all have opinions, hopes and dreams.
