I’ve NCd for this. I’m looking for some honest thoughts and opinions that I probably won’t get in real life.
I’m 34 and have MS. I tend to look ok (not to myself, but as in, you probably wouldn’t guess to look at me apart from on a very bad day). Lots of my symptoms are invisible: balance, muscle spasms, numbness, dizziness, and the worst of them all, fatigue.
I live with my parents, and I work full time. My parents do SO much for me, they do the food shop and all of the housework. I do pay my way (a third of everything, and a bit extra). I go to work, exercise twice a week and then crash at the weekends. I often won’t leave the sofa because I’m so exhausted. If I try to see friends etc, I’m done in for the next working week too. I truly can’t explain what the fatigue feels like- I’m so bone tired and brain foggy I’m tearful at the thought of another day ahead, even after nine hours sleep.
I desperately want to buy a house and have some independence, but I really can’t envisage being able to work full time and then do all of the life stuff that my parents currently are basically doing for me. I’ve realised I probably will never be able to have children (a whole other heartbreak in itself).
The thought of my life being as it is forever terrifies me. I feel like if I could work 3 days a week, I could still have 2 days for rest and be able to manage things like cooking and housework. But to do this financially, I’d have to look at PIP.
I think part of what makes this difficult is that I probably don't fit the stereotypical picture of someone who needs disability benefits. I work full time, I exercise twice a week, I look relatively well most of the time. I can do things, and I recognise that there are people with MS who are much more physically affected than I am.
But I also spend most of my non-working time recovering from the basics, and I rely heavily on my parents to do the things that make everyday life function.
I feel a bit stuck between two things. I don't feel disabled enough to justify asking for support, but I also know that I just can’t continue living like this indefinitely. I don't want to spend the next 30 years working full time, coming home exhausted and spending my weekends recovering. I want a home, independence, relationships, experiences and a life that isn't entirely dictated by how much energy I have left.
I suppose I'm asking whether reducing my working hours and potentially claiming PIP is a reasonable way of approaching this, or whether I'm being unrealistic and actually this is just what my life is going to look like. I also recognise that lots of people are exhausted from full time work!
I'd really appreciate honest opinions- I genuinely want to hear how other people see this, even if it's not necessarily what I want to hear. Thank you.