Expectations – Learning How to Let Them Go

Over the past few months, I’ve been working hard to try and let go of my expectations. The “old Jen” was a certain person – someone who liked to keep a tidy home, loved her job and had an active social life, as well as being a mum to 2 beautiful children and wife to a successful husband.

But life changes, especially when you have a chronic illness, such as multiple sclerosis. People who have read my blog for some time know that I was diagnosed with MS at age 15, but I was relatively “well” for 15 years after the diagnosis. My relapses were few and far between and my neurologist at the time said that I was unlikely to have significant problems as I got older because my case was so mild. But, that wasn’t to be, and I started declining in mobility and acquiring common MS symptoms, such as heat intolerance, fatigue, and spasticity. I was diagnosed with secondary progressive MS in 2017.

The thing is, I’m generally quite a positive person. Although I am sad that I had to stop working for the NHS due to the demands and pressures, I’m also extremely pleased with the fact that I have found a way of working – privately for a few hours a week – that works for me 100 times better than working in the NHS did. Although I was diagnosed with secondary progressive MS in 2017, I was also pleased in a way for the diagnosis to finally confirm what I had suspected for years. I am always happy to try anything that I can to try and alleviate my symptoms,  such as having a stem cell transplant in 2019.  I usually have a “can-do” attitude, in spite of my frustrating experiences and symptoms.

But I have to admit that, as my mobility and fatigue continue to worsen, my positive attitude has lessened somewhat. And that frustrates me.

Expectations – of Myself

I expect myself to be the same person that I always was, but I am not.  How can I be? I physically can’t keep a tidy house easily or have an active social life. I can’t continue with lots of my interests, because I physically can’t do them – going out dancing, running, baking… Even reading physical books is tricky when they’re that little bit too heavy for my clumsy hands to hold. It’s been awhile since I have crocheted, but I’m scared to get started again in case my hands don’t work like they used to .

Expectations – of Others

I have recently written about my kids becoming frustrated when I ask them to do something for me.  I guess I shouldn’t be surprised, they are typical teenagers! But I have also recently experienced my social group getting a lot smaller as I stop being invited to events that I would have been to in the past.  Perhaps it is because they think that I may not be able to attend due to lack of accessibility or because my need to sometimes cancel at the last minute is frustrating?

Family members sometimes become frustrated that I don’t eat dairy or meat like they do, impacting on what food we eat as a family – especially because I am not the person who cooks dinner (because I can’t!) .  They are also frustrated that I am always asking them to take things off the floor that I could trip on. I guess I expect others to understand why I can’t do everything that I used to and to remember that day-to-day. I expect others to know that I am the person who knows best how to deal with a body that isn’t working – for example, if I have a fall, I know how to deal with my particularly spastic legs when trying to get up again.

Learning to ‘Let it Go’

I know that other people feel frustrated about my MS and its symptoms – it isn’t just me going through this, after all. But worrying and feeling frustrated, about myself and others, just feels more stressful to me. I know that I need to just “let that shit go”. But how do I do that? Well, in the past I used exercise to deal with stress and frustration and I still try to do that, albeit it looks a bit different now. I’ve started trying wheelchair cardio as a way to get my heart rate up. I have accepted the fact that even gentle yin yoga is getting tricky for me as it is difficult to get into some of the poses. Despite this, I still try and adapt the pose, doing a different one if needed. But then I end up feeling frustrated that even “simple” poses are getting difficult for me!

I Can Only Do What I Can Do…

And that’s the key isn’t it, to “letting it go”? We can only do what we can do… So I’ve really had to think about chilling out and accepting where I am now. Which looks 100% different to how it used to but I’m telling myself, “that’s okay”.

• I used to drink a lot of wine when I was working for the NHS; I had a habit of coming in from work, and then having a glass or two whilst making dinner or once the kids are in bed. Nowadays, it really impacts on my MS – I already can’t walk very well or get to the loo in time, adding alcohol to the mix just doesn’t help! So that has reduced and the result is that I feel better for it.
• I may not be able to cook easily, but I can use the microwave and I have recently tried ‘Stocked‘, which is a range of frozen foods that can be cooked in around 4 minutes.  However, unlike traditional frozen meals, they are fresh foods, quickly frozen and they are healthy. I’ve only just started having them, but I like them so far and they allow me to have easy meals in a flash if I add some pitta bread or rice. I wish that I could easily cook my own meals in bulk and freeze them, but I find this time-consuming and difficult with my lack of being able to stand at the oven and cook. They seem to be the next best thing and it means that I can have something different to my family, but not spend too long cooking it or asking my husband to do it.
• Some friends may have fallen by the wayside, but I try to remember that not everyone has.  I am spending New Year’s Eve with a friend that I have known since I was 14 and she is happy to come and celebrate at mine, rather than go out. Other good friends will check accessibility of venues before we decide to go there, without me even mentioning it.  Losing friends can be very upsetting, but I have to learn to ‘let it go’ because otherwise my mental health will suffer.  I treasure my friends who are still there for me and would rather have fewer really lovely friends that lots of acquaintances who aren’t that bothered to see me.
• The number one thing that I think has helped me recently? Meditation. I know it’s not for everybody, it took me a while to get into it and even then I didn’t stick to it all the time. But I have now been doing it at least 3 to 4 times a week, and it has made a massive difference to my mental health, and my ability to “let that shit go”. I’m generally calmer with both myself and my family.  Here is an interesting video from Overcoming MS about the benefits of meditation when you have an inflammatory condition like MS:

I remind myself that I once made myself have a meditation challenge, where I meditated every day. The outcome was great, but, life got in the way, and I didn’t stick to it diligently (more ad hoc), I’m so glad that I’ve started it again. For me, it was something I had to persevere with at first because it’s only after having a few sessions that I noticed the difference. Even now I sometimes just do a five minute breathing exercise, and that makes a big difference to me, even if I don’t actually meditate.

Meditating has helped me to really appreciate the little things as well – I had a really nice cuddle from my daughter this morning and, considering she’s 14, I don’t get them very frequently! Having a really nice cup of coffee or a great time with my friends when I do manage to go out with them, makes me realise that I do have lots to appreciate in my life, even though I have lots of hardship too.

I have a subscription to the Calm meditation app, but these are some great free guided meditations through Overcoming MS.

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So I am really trying to not worry or stress too much about my MS and the fact that it is getting worse. I’m not completely there yet, but these things have been helping me so far. Is there anything that helps you to deal with the stresses and worries that you might have?

‘Til next time

Living with a Progressive Chronic illness…. Positive Aspects to Having MS?! SPMS and My Body Image