This is my MS – Mental Health and Cog Fog

After updating you about my changing MS physical symptoms in my last post, I thought an update about my “mind” symptoms might be interesting. Namely, cog fog and my mental health.

I chronicled the changes to my overt MS physical symptoms in that blog post; but covert difficulties can change over time too.  Some might have changed for the better –  others, maybe not so much.

I mentioned in my previous post about my mind, in 2017, that it’s easy to notice the changes that you go through physically as someone with MS, purely because you live with them daily. Changes in attitude, mental health and cognitive function are more difficult to recognise, I think. Reading back blog posts and journal entries that I may have made and remembering chats that I have had with family and friends help me to try and see the changes objectively.

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Mental Health – the Positives

Life

I wrote my first blog post about my mind and mental health back in 2017. So much has gone on since then in my private life and with my health. My husband and I went through a period of separation largely due to the stress that my chronic illness brought to both of us  Without going too much into it, unless you live with someone or you are someone with a long-term chronic illness that impacts you, your family and your future, it can be difficult to understand just how much it can affect those around you. Sometimes it may take a break from the situation or a person to recognise just how much the chronic illness has overshadowed a fundamental, loving relationship.  After a difficult few years, I’m pleased to say that my husband and I are trying again. And that’s definitely impacting positively on my mental health.

HSCT

I’ve also been through HSCT (Haemopoietic Stem Cell Treatment) for my MS – a difficult treatment that resulted in me losing my hair, having time away from my family for an isolated stay in the hospital and having to be super, super careful not to subsequently pick up any kind of bug. All I can say is, I’m so pleased that I had the treatment before COVID-19 raised its ugly head. Going through that kind of treatment, feeling so poorly for such a long time and losing my hair, really took a lot out of me.  I was scared and I wondered whether the upheaval and uncertainty around whether it would actually help my MS would be worth it. But you know what? I got through it. I’m proud of myself and, in hindsight, I was brave and determined to do anything that, potentially, could positively impact my MS and its progression. Only this week I read an article that said people with active SPMS who have HSCT are shown they could progress more slowly than those who were on disease-modifying drugs.

Read More: The HSCT Chronicles

Work

The six years between 2017 and 2023, also saw me having to take early ill-health retirement from my much-loved job of being an NHS speech and language therapist. Since that time, I have built up a successful independent speech and language therapy business that works around my health needs from my home. I work with some lovely parents and children and, okay, I can only see a few children a week instead of the 6 a day that I did when I was still in NHS work, but it means that I’m still doing something that I love whilst I still feel like I can.

I might not always feel it, but, as someone who has lived with MS for over 29 years, I truly am a mentally stronger person than I feel I would’ve been if I never had MS.

Mental Health – the Negatives

Of course, all of the things that I detailed above – the separation, the retirement, the treatment – all came with a hefty dose of sadness and negative feelings. I guess it’s only in hindsight that I can say that everything I went through has made me a stronger and more positive person. I do realise, though, that I still struggle in some respects in terms of my mental health, and I suspect that these feelings are going to stay.

I have mentioned in previous posts that I feel that the motivation to keep going and keep doing everything that I can to be as well as I can with MS is getting mentally more difficult. As my MS progresses, my positivity begins to falter. The reality is that Multiple Sclerosis is a progressive disease and I, as someone with secondary progressive MS, have to accept that not everything that may help others with MS is going to help me in the same way.

FES

A good example of this is my recent use of a functional electrical system (FES); I had truly convinced myself that it was going to be a game changer. I’d seen videos of people using an FES and suddenly being able to walk without crutches or a cane. That’s not the case for me, it just makes me feel slightly steadier when I’m using my crutches.  I know this in itself is really positive, but I still wanted that miracle of suddenly being able to walk again without mobility aids. I persist with it though, because I know that it does help me to walk more steadily and safely.

OMS

When I started writing this blog, Tripping Through Treacle, I was steadfast in my belief that the Overcoming Multiple Sclerosis programme would have a positive impact on my worsening MS. OMS encourages plant-based eating, meditation, exercise, vitamin D and the use of disease-modifying drugs in order to help you keep you as well as possible with MS. I started following it when I noticed my walking worsening.  Again I thought that it was going to be like a magic pill and, if not fix my problems, at least stop them in their tracks. Well, this hasn’t happened, but I’m loath to give up the recommendations; I keep asking myself how much worse I would be if I didn’t adhere to it?  In fact, the OMS website refers to Professor Swank’s research, which found that those with progressive MS, who followed a low saturated fat diet actually progressed slower than those who didn’t.  So, although I’m not as perfect with the program as I was in the past, I still do avoid dairy and limit saturated fats, as well as the other recommendations, albeit not as regularly as I used to (in the case of meditation, for example).

So, yes, I would say that, since my last update about my mental health, I’m not as positive. I guess that’s par for the course for people whose symptoms worsen! Writing this actually makes me realise that if I did do more meditation, I would perhaps handle it better than I am at the moment. I used to do it every day, but now it’s more like once or twice a week; I know that upping that amount will make me feel better.

I still take an anti-depressant – duloxetine – to support my mental health. I’m lucky that this medicine also helps with chronic pain, which is another feature of my MS that worsens the longer that I am living with MS and its symptoms.

Cog Fog!

Rereading my blog from 2017 about my mind, I realise that I didn’t even mention those MS symptoms that can impact on us in our way of thinking.

Cog fog, also called “brain fog” is pretty common in many chronic illnesses.  Healthline even estimates that:

more than half of people living with MS will develop cognitive issues like difficulty understanding conversations, thinking critically, or recalling memories.

For me, cog fog typically manifests as struggling with lots of noise (for example, lots of people talking whilst music is playing in the background), some short-term memory difficulties and problems with word finding. It is definitely something that I’ve noticed more and more over the past few years, though I’m lucky that it does not seem to happen when I’m working with the children in my speech therapy work.  One of the main reasons why I gave up my NHS work, though, was because I found it difficult to “think on my feet” in team meetings and feel like I was as “on the ball” as I used to be.

I have started playing games on my phone – namely, boggle and sudoku – to help and I find that using my skills to support word-finding really helps.  I should probably use an app that would help me with my memory too.

I would love to hear of any strategies you all have to support your cognitive health.

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So there is my 2023 update on how my MS is affecting my mind – my mental health, as well as my cognitive health. I suppose that all makes sense, though I do find that cognitive health is not something that is discussed a great deal, including by the neurologists who oversee our care.  Mental health is something that is being talked more about now, which can only be a good thing and makes it easier for those of us who may be struggling to reach out for help.

‘Till next time,