Living with a Progressive Chronic illness….

….. is really, really difficult.

I wasn’t sure how to start this blog post. I could start by saying sorry as it’s been (another) long break since my last post in November, but I’m sure that you’re used to that from me by now. I could try and be positive and say that I haven’t had to think about my Multiple Sclerosis over the past few months… but that would be a lie. So, instead, I thought that I would just be honest that that the reason why it has been so long since I last blogged is because living with a progressive chronic illness and disability is really, really difficult.

Every day over the last few months, I have been berating myself for not doing the things that I used to do to keep myself feeling motivated and proud of myself as someone who lives with a chronic illness. My yoga practice has become sporadic and it’s difficult to know if I’m finding even the chilled-out “Yin” yoga more difficult because of my progressive disability and spasticity, or if I have become more disabled and spastic due to my lack of yoga. What comes first, the chicken or the egg? Maybe my disability and spasticity have worsened due to me taking my eye off the ball and not being as consistent with my diet as I had been in the past, since 2014? Or would I have found things harder anyway? After all, multiple sclerosis is a progressive disease, particularly if you have secondary progressive MS, and your history includes almost a complete lack of disease-modifying treatment. And if it’s been almost 30 years since you were diagnosed.

I have to admit, that typing that I have been following Overcoming MS since 2014 has completely shaken me; has it really been 10 years?! That means I started following it when my daughter was three and my son was six. Perhaps I should focus on the fact that, even though I am now pretty much wheelchair-dependent outside, the spasticity actually allows me to still spend very short amounts of time standing up with the aid of crutches inside.  Perhaps I should remind myself that the Overcoming MS protocol shows that following OMS when you have a progressive disease has been shown that progression can happen more slowly in comparison to those who do not follow it.

Despite that, I recognise that my overwhelming feelings at the minute are ones of:

Frustration

The thing is, it’s very, very easy to beat yourself up when using lifestyle factors as a way of potentially modifying your disease.  It is that toss-up between wanting to do the very best for your health, but also thinking, “I just want to enjoy a bloody chocolate bar with my cup of tea.” It’s not as if I have easy access to other simple pleasures; that bit of chocolate might be the only bit of serotonin I get that day or even that week.  In the past, before my symptoms showed themselves, that serotonin hit was achieved via exercise, travelling to wherever I wanted to go, running around after my very young children, nights out with friends… As my world gets smaller, I need to take enjoyment wherever I can find it.

Jealousy

Does anyone else feel jealous of people who, despite being disabled, do not have to contend with the progressive factor? I feel so bad saying it, as living with any kind of disability can be so difficult, I imagine. But I admit: I do feel jealous of people who, despite obvious physical disability, (for example, the need to use a wheelchair) do not have to contend with their bodies also gradually shutting down. In particular, I always feel that when I see others using a self-propelled wheelchair. I know that I would only manage a couple of pushes using my arms before fatigue and weakness means that I would need to be pushed. I hate that I can’t manage to get my power wheelchair into my car by myself. The chair offers me independence, yes, but only to a certain extent, as I certainly rely on others when I want to use it.

My jealousy doesn’t just end with feeling envious of other disabled people of course; jealousy of my family and friends is a daily occurrence, as I just wish that I could move like they can. I wish that I could have the lifestyles that they do. If I worked full-time for the NHS doing the job that I was trained to do, I would have roughly 4 times the salary that I have now as a person medically retired! We wouldn’t have to move house to accommodate my disability and we’d be able to go on holidays without having to spend ages planning to find out how accessible they are.  We would actually have the money to go on holiday.

Guilt

Of course, one of my major feelings at the moment is guilt. I won’t go into it a lot as I’m sure that many others who are living with MS or other chronic illnesses feel the same. But I just feel so guilty that I can’t be the mum that I want to be to my teenagers: a role model in regards to working and fitness and enjoyment of life. I feel guilty that I can’t do things around the house easily, and that I rely upon my husband and children so much – they already have full-time jobs of work and school! I feel guilty that I don’t have the energy to do very much at all now. That I need to give myself days or weeks to prepare for an activity and then days afterward to recover. How do you balance that when you’re on holiday for example?

A Myriad of Feelings

I guess that I need to admit to myself that there are going to be times when I need to stop and take my own advice around dealing with my feelings. I know, for example, that using meditation helps me to feel more chilled out. And I know that it is completely normal to feel all of these emotions at different times. That just because I’ve been diagnosed for 30 years doesn’t mean that I’ve accepted the fact that I have a progressive disease and that my feelings can’t get the better of me.

Some of my past blog posts should help me when I’m feeling particularly down:

How to Feel More Positive

Self Kindness and Acceptance

5 Ways to Reduce Chronic Illness Guilt

Parenting with Progressive Symptoms

Feeling Overwhelmed? Tips to Help

I’d love to hear if others feel the same and, if you do, what you find helps you get out of that “funk”.

Other Stuff

Of course, as is always the way with multiple sclerosis, there have been lots of other things going on in my ms-life over the past few months. I’ve been ill with an ongoing UTI and fluey-type cough since Christmas. My husband and I are trying to get the house sorted so we can it valued and potentially put on the market (provided that there is a bungalow nearby in our price range). I might be starting an MS drug – Siponimod– provided my medical checks (blood test and ECG) come back normal.  Our son is about to do his GCSEs – am I really that old?!

I am sure I will tell you about all of these things over the coming months. I have to admit, it’s been lovely to blog again and I really do need to do it more often. Sometimes, getting your thoughts out really helps them to make sense in your head.

***

I won’t leave it so long next time – I really hope that everyone is well and looking forward to some better weather over the coming months if you’re in the UK like I am.

‘Til next time