This is probably what I struggle with the most. It’s not something that can be solved so I find largely ignoring it to be the best option. However, every now and then you get a reminder and the guilt surfaces again.
MS is not fun and makes life difficult. It interrupts your life plan or goals and forces you to live a compromised version of your life. Not that I had a life plan or path in mind but I’m pretty sure I could have thought of something better than a life of foot drop, fatigue and weakness to mention a few symptoms.
Don’t get me wrong, I’m not throwing myself a pity party (although there are cookies!) In fact I want to consider how MS affects those around me. I’m very lucky, I have a wonderfully supportive family, a loving husband (when he’s not working) and great friends to listen and sympathise when necessary. They all do their best to ensure I have everything I need and anything that might make life easier. I’m not too proud to say I’m spoiled and that my life with MS would be a different story without these guys.
Telling my loved ones that I have MS sucked. My husband was there for the whole process of being diagnosed so he knew as much as I did. Telling my parents was my big concern. Parents just want the best for their kids and to see them happy and independent. With my declaration I shattered that option. They were brilliant, upset of course, but really supportive and positive. I know it is difficult for them to see me struggle and they are really amazing at keeping me going. I spend a lot of time with them laughing and joking. They do so much for me but, as I tell them regularly, they chose to have a child 40 years ago so they only have themselves to blame!
MS restricts relationships a lot. My friends and family have to accept that time with me will most likely be low key and sedentary. No hikes or treks for me! I don’t like crowds and am wary of new places so often don’t want to try anything different. I remember a conversation with a friend where I pointed out that MS hadn’t affected our relationship at all since we sit, chat and drink tea either way so maybe it’s not that big a problem really.
My biggest regret is the impact MS has on my husband. I hate that MS and I have taken life choices away from him. He has the pressure of being the sole earner in our household, we don’t have children and our long term goal is to buy a bungalow! We have to pre-plan everything and are anything but carefree. Even the thought of holidays brings stress.
It also bothers me how much I have to ask of him.
- Can you get me this?
- Can you make dinner?
- Can you pick up the stuff I dropped on the floor? (including me sometimes!)
I get sick of listening to myself so I really don’t know how he copes. Maybe that’s why he works so hard 😉 To be fair, I bark the same orders at my sister when she’s around and she hasn’t killed me yet either.
So really a MS diagnosis is tough on you but also on those you care about and that care about you. I hate that I brought this into their lives. None of us deserve to live with this but we’re coping the best we can and learning as we go. Every new symptom or sign of progression brings the guilt back to the fore. However it’s certainly not all doom and gloom. I have discovered that mindfulness, honesty and openness about how I’m doing helps us all to cope. We still have fun and laugh a lot which is probably the most important thing we do. I’ve learnt to accept help gracefully, in fact, I quite enjoy it.
Actually I’m just wondering how fantastically awesome I must be that people are willing to put up with all this. Anyway… cookies…