Soon after my meeting with the consultant in Jan 2022 I had an MRI on my brain and spine.
This brought the results that there were no new lesions on my brain.
This was good news but due to the new symptoms of spasticity, which had been with me for over two years, the Secondary Progressive phase of my MS was still valid.
After this news I spent time getting my head around this new reality of my MS.
I had gone my whole journey of MS not regarding myself as disabled.
Yeah, I needed my stick, I can’t run anymore, and I find steps difficult these days but I’m not disabled!
However, as time went on with my growing spasticity, I began to accept that disability was more and more a description of my physical reality.
I now rely on my walker a lot of the time when I am outside and have used a wheelchair a few times recently when long distances of walking are necessary.
The realisation of this new status brought lots of emotions. I initially felt incredibly sad and had to grieve for the abilities I had lost.
I spent a long time blaming myself for not looking after my body and letting MS run its own destructive journey.
However, I can also see that sometimes MS has its own plans and it is impossible to expect to not be harmed by this illness.
I am still finding it hard at times to come to terms with how life now is but I am trying to be positive about how my abilities are and how I am still able in many ways.
I have found that by taking advantage of medications, treatments and mobility aids I could make my life much easier.
One example of this is that I used a mobility scooter when going to Legoland with my family. This helped me so much!
I was able to preserve energy and could make my way around the park at a much better pace.
Since becoming more experienced in using wheelchairs/mobility scooters at days out I am more aware of how common it is to have access of them.
On many days out wheel chairs are available to book in advance, usually for free, and mobility scooters can be hired for around the cost £30 for a day.
In Sept 2022 I had my first experience of how Botox can help with spasticity.
Botox was injected directly into my calf muscles. The Botox works by blocking the chemical signal between nerves and muscles that makes the muscle tighten.
After having the injection, I felt the benefit about a day later. My legs felt very much lighter and moving around was much easier. This continued for about 2 weeks then the tightness and heaviness sadly returned.
After speaking to the doctor who gave me the original injection, she expressed her sadness that the benefit didn’t last long but did explain that the amount of Botox given to me “was quite a pants amount” (!!) as it was my first treatment and they needed to see how I reacted.
This treatment can only be repeated after 12 weeks of a Botox injection, so I’m sure the next dose will be a lot more beneficial.
The next step of my current MS journey is to have another meeting with my consultant then discuss any further steps.
My hopes for the future are to begin disease modifying treatment, to find further ways to help with my drop foot and possibly look at getting my own mobility scooter.
These past few years have been very difficult ones, both physically and emotionally.
I have found ways in which I can better look after myself (diet, exercise and lifestyle) and live a much better life with my MS 🙂
The Kids, Me and MS 