New Meds, New House, New Feelings about My MS…

Hi all, I hope that you are all doing well?

Yet again, I can’t believe where the time goes – it’s already March and I’m pleased to say that the sun is shining today. I may be mainly sitting inside, but even seeing the sun outside has a positive effect on my mood I thought we could have a quick catch-up about my MS life; there have been a few new things happening: I’ve started a new medication, we’re (still) looking into getting a new house, and I’ve been having new thoughts and feelings about my MS.

New Meds

In my last post, I spoke about going for a second opinion – not about my MS as such, but about the services and support that I’ve (not) been getting from my healthcare team. I’m pleased to say that I managed to get that second opinion – with the help of my parents who could pay for a private neurology appointment. I am very aware that not everyone gets the opportunity to pay for a private appointment and that I am lucky to have parents who are medical professionals who feel as frustrated about my care as I do!

I ended up going to see a new neurologist based in a city closer to me than the one that I usually see. I had the opportunity to talk to him about my MS, its history, and the problems that I am finding with my MS support. I’m not going to say my “MS support team” because that’s exactly what I feel that I haven’t had; I haven’t even had a regular MS nurse to go to with problems due to my MS support being so piecemeal and fractured. Luckily, the neurologist that I saw confirmed that I could see him via his NHS caseload and that those things that Sheffield couldn’t provide for me (due to living in a different county) were available through him. Most notably the medication that Sheffield said I should be able to try: Sativex, which is medical cannabis. This is only available on the NHS for MS patients and, although a neurologist in Sheffield said I should be able to try it – as I have tried everything else for my spasticity – the Sheffield MS nurses said they couldn’t support me with it due to me not being under their caseload and in a different county. Within a week of seeing the new neurologist privately, I received a phone call from the MS nurses in the new team explaining how I was to take the Sativex and it was delivered to me.

I will write a new blog post once I have used the medicine for a bit longer, but I can already say that it is helping me. It seems to particularly help at night in bed, when I usually get woken up with painful spasticity in my legs and, especially, my feet. The Sativex seems to help me sleep better and longer with fewer wake-ups during the night. Finger’s crossed that continues!

New House?

I currently live in a Victorian terraced house with one bathroom upstairs and a shower over the bath. In the past, I’ve had support from OT services, who have installed a second bannister and a grab rail to help me get to the top of the stairs. However, they said they couldn’t put a grabrail in my shower as the walls weren’t sturdy enough. As my leg spasticity worsens, I struggle to get into the shower without the help of my daughter or husband, and I end up having to hold onto the shower rail to have some balance. This is obviously not ideal and not particularly safe!

I applied for a Disabled Facilities Grant (DFG) to help us make adaptations, but unfortunately we did not qualify – this  surprised me, as I am on an ill-health pension, and my husband is on minimum wage. So, if moving is the only choice there is, I would ideally move to a bungalow, with a wet room. The thoughts running through my head:

• I would really like to be in a bungalow, but any that are for sale are valued at more than we could sell our house for
• Maybe one of the options would be to buy a new build and install a stairlift.  At least new builds have a bathroom downstairs and would hopefully be cheaper to heat than our current house
• I worry that even if we did get a house with a stairlift, I won’t be able to use that in the long run if my MS keeps getting worse and worse and, as someone with a degenerative illness, there is a big chance of this
• Getting a personal loan for adaptations to our home is something that I’m reluctant to do as I don’t want to add to our monthly bills with a loan to pay off

So it’s very difficult to know what to do; I think that we’re going to have to go down the route of getting a new build but adding a stairlift as there are no bungalows within our price range. I’d love to know what you have experienced – has anyone had a DFG? Have you had the same problem as us, where bungalows are out of your price range? All I know is that I need a better set-up because I’m starting to feel very unsafe in our house and I’m struggling obviously to keep on top of the housework and the garden. I’ve decided that my ideal would be a bungalow with a wet room and a courtyard garden that we don’t need to mow – if you know of one, let me know!

New Feelings and Thoughts About My MS

I think that all the worry about housing and feeling unsafe in my home has really made me consider the impact that my MS is having on me at the moment. I was told that being diagnosed with secondary progressive MS can be quite a relief as you know that you’re not going to have as many relapses. However, I find that the changes associated with SPMS can sometimes be just as unexpected and surprising. When I think my legs can’t get any worse, they do.  I suspect that my legs take up half my body weight which means that I am carting roughly 25 -30kg of dead weight around with me all the time – no wonder I feel my heart rate rise when I do walk and my fatigue is so all-encompassing. I’m struggling to get in and out of the shower and in and out of bed. I need help with getting dressed and putting jewellery on. I’ve found that both my bladder and bowels have started to be affected so I need to keep a really close eye on my diet and gut health, as that seems to impact on them. Luckily, my new neuro has arranged for the continence service to come and visit me at home soon.

As mentioned above, I worry that, even if we do move, it’s not going to be the answer long-term.  How much worse am I going to get? The problem with MS is that you never know for certain. I try and be positive – I’ve considered the fact, for example, that perhaps the spasticity of my legs – even though bloody annoying – means that I can still sometimes walk. This might only be around the house whilst ‘wall- walking’ or using a rollator or crutches, but it’s still walking.

The thing is, the naturally positive attitude that I’ve always had with MS, even as I have got worse, is leaving me. I feel frustrated that I can’t do the things I want to do, things that make me, me. Although I was able to ride the fastest zip line last year (one of my bucket list ideas), it was such a struggle and I needed so much help and support to do it, that it has put me off doing anything else exciting again. I used to jump out of planes, make people laugh with my “Axl Rose dancing“, have the energy to work and blog, create craft ideas for my kids or just generally potter around the garden. I can’t do any of that now as, even doing a couple of things a day, for example showering and then tidying the kitchen, shatters me. I have very little energy, and I’m starting to feel disheartened and frustrated that, no matter what I do, I’m just not going to notice the difference or feel any better. As a result, I lack the motivation to do the things that I know used to help me – eating well and exercising. When I do make the effort, it makes me feel better, even if just in my mind. But it can be challenging to make that effort now when I don’t feel like it will make much of a difference.

I feel jealous of others, even those in wheelchairs who can use their arms to propel them forward, as my arms are becoming weaker. I feel envious of others my age who can do a full day of work and then go out in the evening to a yoga class. And I hate the fact that my children don’t remember me as an able and capable individual who could do things without extra help. If I am honest, I’m probably past the point of doing any private therapy work, but I still try and do a couple of sessions a week, so my kids can actually see that I’m something other than than my MS, working as a “normal” Mum. I worry that if I’m struggling this much right now at age 46, what am I going to be like in another 10 years?  And I feel bloody boring when talking to others, because I have nothing exciting to tell them or to contribute to a conversation as I usually haven’t done anything!

So yes, frustration, worry, jealousy and envy are all things that I’ve been feeling recently. But it’s the despondency that is so new to me as someone who was previously so determined to take control of my MS. The feeling of losing control is so difficult but I suspect that I just need to accept that that’s what my life is now. I’ve joined an advanced MS chat forum on Facebook, which can be a good place to share my feelings with others who are going through the same, people who understand.

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So that’s my recent life with MS. A bonus, I guess, is the fact that I’ve been able to read some good books and watch some great telly. I think that Stephen Graham is a fantastic actor, and his most recent show, Adolescence, is absolutely brilliant and highly recommended. I’m enjoying listening to an audiobook called “The Nightingale” by Kristin Hannah, which was highly recommended by a friend, and I spend loads of time doing word games to try and keep my brain working! I love to hear from you on what keeps you going when things seem very difficult.

‘Til next time,