I’ve lost count of how many drafts I’ve written of this blog. Each one reads like a CV - jobs I’ve had, qualifications I’ve gained, things I’ve done… but none of them feel right to me. They all have a defensive tone trying to argue a point I don’t think I actually believe. The crux of the matter is I think I may be a skiver.
Before my Mum shouts at me, let me explain. I had a life before MS with plans and goals. I got a lot of my self worth from my academic life, earning a wage and being busy. This changed for me over the course of living with MS and I don’t think my values changed with it. Lots of people with MS live full lives and continue with their careers but that wasn’t the case for me; and I feel like I have failed.
I am prematurely out of the workforce and this leaves me feeling useless. My life is more difficult now, it requires constant readjustment and going with the flow. I often don’t feel in control of my life and find it hard to plan for the future or to commit to longer term goals as I do not know how I will be from day to day. It’s not that I don’t want to; I just don’t feel that I can.
I can no longer rely on the things I took for granted to give me a sense of purpose. I am not a software developer or a tutor anymore and that loss of identity really stings. I have no income; I do not qualify for benefits, I rely entirely on my husband. The lack of income makes me feel like a burden and a waster.
Without an external driving force or validation like a job or children it can be hard to plan your time. I do try to keep busy when I can, I don’t like to be completely idle, but it can be difficult. My lack of energy and mobility makes even the smallest tasks exhausting. Standing and walking short distances really drain me. I have to concentrate so much to achieve the little things it doesn’t leave room for anything else.
In the past I engaged in lots of volunteering roles for my hospital and Age Action. MS progression has caused me to step back from volunteering for now, but I’ll look into this again. It really did help; I felt useful and I got out of the house to meet nice people.
What do I do on a daily basis? Not a huge amount by normal standards. However, I’m not normal so normal standards shouldn’t apply, right? That is easier said than done. It is a constant mental battle of what I want to do and what my body is capable of. “Just listen to your body”, they say. But mine is a compulsive liar! I have days where my body says ‘Go for it’ but everything ends up on the floor, including me. Other days it screams for me to STAY IN BED but stubbornly, I go to the gym. When do you push and when do you down tools? Who knows? 14 years in and I’m still learning what my boundaries are (bloody things keep changing!).
With the current pandemic and the country on lockdown people may well be experiencing issues like those I face every day:
- Without daily employment it can be challenging to maintain our identities.
- We can’t just come and go as we please; lots of logistics and planning are now involved if we leave the house.
- We can’t make plans because we don’t know what tomorrow will bring
- We can’t commit to future events as everything is uncertain
- Constant fear of the unknown and how we will get through this makes staying sane challenging
Maybe I’m like a swan. I look calm and serene on the surface, but my legs are peddling away underneath. In my case, I look disheveled, but my mind is racing, trying to problem solve, trying to cope.
It may seem like I’m living the dream - lying on the sofa binging on Netflix without a care in the world. But be careful what you wish for. That image quickly looses its appeal when you don’t have other options.