Multiple sclerosis (MS) is a lifelong condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
Our resident, Jill Hitchcock from our Taunton housing complex Tennyson Court, had symptoms from aged just 15 but didn’t get diagnosed until years later.
This month, we're highlighting our customers and colleagues with hidden disabilities.
As it's MS Awareness Week for the National Multiple Sclerosis Society, we're sharing Jill's story so that her experience can help support others.
Jill Hitchcock's story
It was February, in the year of 1976, when there was a lot going on in my life. My marriage had broken down, I was left with two small children to bring up and I was 28-years-old.
I was stressed with headaches and vision problems which I ignored, then a strange numbness crept down my right thigh and I kept tripping over my own feet. The doctor monitored me for a few months.
Things started to escalate after that. I had problems with my bladder, walking across a room my legs and back were very weak and getting up from the chair was difficult because I was so very tired.
Trying to work as a cashier in a Bookmaker was impossible but I carried on, I couldn’t stand the lights. I met my now husband at this time.
In September 1978, the doctor sent me to see a neurologist who examined me and straight away asked me to leave so he could talk to my partner.
He told him that he thought I had MS, he never told me and my partner knew nothing about MS, so when we got home he explained to me what the doctor had said. I replied ‘thank god for that - I thought I was going round the bend with all these strange symptoms’ and I cried with relief to find out I was not imagining it.
I never had any test or a lumbar puncture as back then there was not much to do. Over the next year, things did get worse slowly so I was put into the hospital for several weeks to try a course of physiotherapy and injections called ACTH.
Apart from leaving me with a bad case of acne, it never really helped and the physio left me even more tired.
The following year, I had another course of ATCH injections that didn’t help either. I was slowly deteriorating over time with a walking stick with walking and distance I needed a wheelchair. Incontinence was a big issue as well, I had no control bowel or bladder.
It was 15 years after this that I needed a wheelchair full-time. It was 20 years on from this before I had a brain scan that diagnosed me as having Prolonged Progressive Multiple Sclerosis - this mainly affected my lower body.
I think the worst bit is the burning tingling and shooting pains in the legs especially at night and the night sweats. As well as the tight band called the ‘MS hug’ around the chest.
I have tried various medications to help but they always made me more tired and weak so I choose not to take any medication. I have tried Cannabis which does help but one has to be so careful until it’s legal to be given by a doctor but it is available to certain patients with MS but I don’t fit the criteria. CBD Oil is also good but can be very expensive when using the good stuff.
I’ve stayed positive and never gave up the children, my husband kept me going through it all. I could have sat back and felt sorry for myself but life is for living so make the best of it as you can. I’ve been in a wheelchair full-time for the last 10 years but I can just transfer from the bed to my chair.
Thinking back on past events, I probably had my first episode at age 15 when I was very ill for a month and could not stand or get out of bed. I was noticeably clumsy and always dropping things, tripping over my own feet for years after that.
This last year, I have noticed it affecting my arms and my hands tingling as well as pain from my neck, down both arms but some days are worse than others.
Just another of the many MS symptoms. None of us are exactly the same. MS has taught me to be patient, kind and caring to other people as you don’t know what hidden problems they may have.
There are days when I cry in pain but there are also good days so it can balance out. I tell myself I have had MS for well over 40 years so I’m doing ok. I don’t have a carer as I look after myself as years have taught me most things can be done one way or another.
And my children and family are a great support to me. If I need help I ask for it. Now these last few years, I’m a carer for my husband who has dementia. It’s not an easy life but one I’m prepared to do.
So there is life after MS so never give up.