Vicky

6 “Feel free to link me”

I had a lovely spa day with Niamh yesterday, during which we had lots of time to talk. Niamh told me that the first time she saw me using my walking stick, she felt quite tearful, though hid that from me at the time. This led to a general conversation about how it can be tricky to know when to offer help and if that could ever cross the line into “fussing”.

I remember an occasion when I was much younger and saw someone I vaguely knew waiting to cross a busy road. Knowing that she was blind, I went over and offered to help. She immediately replied “I’m blind not fucking stupid!”. I remember being upset that she had interpreted my efforts to be helpful as something insulting or patronising.

I realise this can be a bit tricky for people but my view is that people are generally kind and supportive and this is what they are expressing when offering help. So, I want to take this opportunity to say I will never take offence at any offer of help as long as you don’t take offence if I say “no thanks”.

My lovely work friends often offer help and a couple of them, rather than repeatedly offering have said “if we’re walking together, feel free to link me, it’ll always be fine”. This kindness means such a lot to me ….thank you ❤️

5 Saying NO to drugs

Like most who have MS, I experience daily pain, spasticity and nerve pain. I don’t want to make a big deal of this, as luckily, my symptoms are fairly mild and mostly manageable. I have been offered pain killers, and steroid treatment but have so far declined. Many also take medication to deal with spasticity and sleep problems too. I am not in the least bit critical of those that use these meds and I don’t think I’m being strong or brave for avoiding them – the real reason is that they scare me!

For the time being I am taking the following:

* Vitamin D – there is a lot of evidence of the link between low Vitamin D and MS and it’s even possible to plot incidence of the disease against distance from the equator (even our bodies are joining in with the North/South divide!).

* Co-Enzyme Q10 – thought to contribute to brain health.

* Magnesium Oil Spray – I find this can really help with leg spasms and the effect is almost instant. It’s supposed to also help with sleep. Apparently we are all likely to be low in magnesium (due to intensive farming lowering soil levels), and absorbing through the skin is a safe and easy way to supplement.

* Omega 3 Fish Oil

I’m considering trying this vegan alternative from Nothing Fishy next time I need to buy. Please let me know if you’ve tried it.

In the winter, I find a hot bath very soothing and also find massage, swimming and hot tubs really help. I am off on a Spa day tomorrow with my lovely daughter Niamh, so that will keep me going for a while.

Next on my list is yoga …

4 Saying YES to drugs

Treatment for MS is limited to a range of drugs known as “Disease Modifying Drugs”. None of these is able to cure MS, halt progression of the disease or repair existing damage. The aim is to reduce incidence and length of future relapse …”future proofing” as my MS nurse liked to call it.

When I was initially diagnosed (2017) my neurologist was of the opinion that my MS was becoming inactive and that I may not have any further relapses so I decided to decline DMDs at that time.

This year I am in a very different position so have agreed to try drug treatment. This has been a really difficult decision for me – I don’t like the idea of taking long term medication and I am very concerned about side effects and long term impact on the immune system and the body. In addition, most of the drugs I am being offered are described as just “moderately effective”. There are more powerful drugs available but these come with worse side effects and much higher long term risk, so I’m hoping to avoid them.

So, in a couple of weeks time, I will be starting Rebif.

I will have to self inject three times a week – I found this rather a daunting thought until I chatted with my friend Beth about it. Two of Beth’s children have Type 1 Diabetes and have been self injecting and regularly checking their bloods for some time. So, Molly and George, you may not have realised it but you have inspired me from afar! Thank you!

More information on Disease Modifying Drugs can be found here …

MSTrust

3 Falling down

At the moment, my worst MS symptom is loss of balance – this makes life very interesting and stressful in equal measure. I am continually bumping into things, falling over and can barely walk through a doorway without bouncing off the sides! I seem to be covered in scrapes and bruises but so far, have thankfully managed to avoid serious injury. I’ve had one embarrassing incident when a very tiny elderly gentleman helped me to me feet and I had to try very hard not to pull him over. Yesterday I managed to crash on my derrière right outside my front door (lots of padding there, so I was fine!). So if you see me staggering about, weaving from side to side and occasionally holding on to things, I (probably) haven’t been on the gin and am just having one of my wobbly days.

Disability in MS is measured using the Expanded Disability Status Scale. My neurologist has put me at 4 (from 2 just 12 months earlier).

2 What is MS?

Multiple Sclerosis is an autoimmune disease where the body’s immune system attacks myelin, which is found in the central nervous system. This results in inflammation and long term damage which can disrupt messages between parts of the body and the brain, resulting in a wide range of symptoms.

The exact cause of MS is unknown, there is no cure (yet) and treatments vary widely from person to person, in terms of effectiveness and negative impact on the body. A more detailed explanation of MS can be found here … www.mstrust.org.uk/about-ms/what-ms

1 How did I get here?

My journey to diagnosis is a slightly unusual one. Most of those with MS are diagnosed in their twenties or thirties, so I don’t fit the most common profile. I am also informed (by my neurologist) that my MS presentation is unusual. Because of this, my early symptoms were attributed to my age, the menopause or my existing thyroid condition and it took 7 years to reach a diagnosis. One GP even suggested my symptoms were “all in your head”! During that time, I had several brain and spine MRI scans and eventually a lumbar puncture. To date I have 3 large spinal cord lesions and numerous white spots in my brain and my recent brain MRI scan showed ongoing disease activity. My neurologist has gone from “don’t worry, go and get on with your life, you may not have any further relapses” to “I think you’ll have another relapse and I think it will be soon”. All a bit scary! But it’s not all bad news … One of the positives about being diagnosed with a life changing illness is that it forces you to reevaluate your life and to work out what is important and what isn’t. Some of the minor day to day niggles of life now seem irrelevant. I am blessed with my wonderful children, fantastic family, fabulous friends, amazing work colleagues and a job I love. I know I am lucky.