Me and my mate MS

Over the weekend I thought about how many of the things I do in my everyday life have to be adapted due to my MS and especially because I am a wheelchair user. After my official diagnosis in April 1999 the adaptions started.  It is most important to remember that activities whether large or small need to be planned in advance. Having MS does not need to be an obstacle, I am living a full and happy life, yes it has its ups and downs and there are times when I could scream and shout with frustration, but is that my MS or my Menopause?

Two weeks ago I had a text from my doctors to say I was eligible for my booster job, I have always said as soon as it is offered I will be there at the front of the queue. I duly logged on and followed the link but because I am in a wheelchair and need to go somewhere that is accessible, I found myself not being able to book the jab for nearly one month. Luckily I was up in Buckinghamshire at Boccia when one of my MS friends told me about the walk in vaccination centre at Stoke Mandeville Stadium. Knowing this, my hubby, SMD and myself went that evening, and we all received the booster jab.

I suppose I do miss living next door to not only the stadium but the hospital as well, which leads me on to my next challenge. I had to go to our local hospital in July for a procedure and due to my specialist seating in the wheelchair a manual hoist is not able to position me back in my wheelchair so I had to attend the hospital using patient transport and on a hospital stretcher.I couldn’t make this next bit up if I tried, I received a phone call from the hospital and they told me the vial they had used for the biopsy was out of date and therefore I would need to go back to hospital and have the procedure done again and of course have the PCR test done three days before hand and then isolate. I was fuming and all because I am in a wheelchair. I must admit I did break one rule, apparently one can not have the booster vaccine within seven days of the procedure due to the anaesthetic but because I knew the surgeon would tell me again how good she was and could do it without an anaesthetic I did go ahead and have my booster.

The next day I was back at the hospital, this time it was over the saga of a mammogram, guess what once again because of my specialist seating I cannot get near the machine to take a complete X-ray. Once again the wheelchair is putting me at a disadvantage. I cannot be the only female who experiences these issues, surely having a smear test and a mammogram is an everyday occurrence. This must be costing the NHS thousands of pounds.

The issue of the mammogram has now been resolved and when I go next year I will need to travel by hospital transport where I then go to the breast screening clinic who have a special manual wheelchair which fits into the X-ray machine so I can have my mammogram. On reflection all this is happening because I am learning to navigate the various services in Hampshire.

I spent the first 22 years of my diagnosis living in Buckinghamshire. I built up my knowledge gradually over the years and now that I am in Hampshire I’m experiencing a baptism by fire.

Sadly being disabled whether you are in a wheelchair or not presents it’s challenges with daily life which others take for granted for instance; when I was still walking I found that bought its own set of problems. I remember when SMD was just 3 years old I took her to nursery school where another mother accused me of being drunk, all due to the way I was walking. Luckily when she complained to the nursery school teacher (who was aware of my MS) she was greeted with both barrels. Then there were issues when I parked my car in a disabled space outside Tesco, before I even got out of the car I was shouted at and told the spaces were not mother and toddler spaces they were for people with disabilities, oh the joys of an invisible disability.

Back to life in a wheelchair, thankfully my friends and family talk to me directly but I still experience especially in shops that I am ignored and they speak directly to hubby, at which point he will say “I don’t know, you will have to ask my wife” that seems to be the trigger to lifting my invisible cloak, when they then start talking to me.

I don’t have a magic answer, disabled people whether old, young, wheelchair bound or walking should be treated equally. Don’t be scared, we don’t bite, I love what Rose is doing on Strictly Come Dancing to raise the profile of the deaf community. Then of course there is our very own Mark Webb who is a member of the Chilterns MS Centre he is doing some amazing work around disability, take a look at his blog ‘One man and his catheters’. Kadeena Cox who also has MS can be seen at the moment on  ‘I’m a celebrity get me out of here’. If you want to see 3 guys having a lot of fun on television watch ‘The last leg’ on channel 4 on a Friday night. These people are fantastic advocates for the disabled community.

Let’s make sure we do not live in fear of speaking out about disability, we all should be helping one another. I know my own mental health suffered during lockdown, put that together with my anxiety and I can end up blowing things out of proportion. Remember we are all there for each other.Whenever I need cheering up I always resort to the Chilterns MS centre exercise, social and fun group and I find a post/picture of something that will make me chuckle.

Take care and have a great weekend xx