Not having to work must be great, right? Being able to rest all day at home?
Wrong. Having a long term health condition is the hardest work I've EVER had to do, and I've had some pretty tough jobs in the past.
There are endless appointments with endless specialists. Consultants in different fields who all need to be seen regularly and updated. Saying the same thing so many times... constantly reinforcing how ill you are. One consultant wants to stop meds, the other says no way, one doesn't know why the other wanted to see you that day. Being batted around like a ping pong ball until they decide who can help and who is better just left out of the picture altogether.
Then there's new diagnoses, different treatment plans, new hope, new disappointments. Huge waiting times for essential treatments.
Then there's the physio. After collapsing at the physio I was referred to the specialist team at the hospital. They said I should have hydrotherapy and home physio. The hydrotherapy caused a relapse so we moved to home physio. However when the home physio came to assess me he was so alarmed by my neurological symptoms (slurred speech, drooping face, flickering eyes etc) that he ran away suggesting I had another CT scan and putting me down as being too poorly for home physio. This resulted in me being referred BACK TO THE ORIGINAL PHYSIO. Appointments. Phone calls. Time out of the house. Time repeating my symptoms and troubles to more and more people.
Then there's the assessments. Assessmets for care. Assessments to prove how poorly you are. Being judged and marked on a scale by a young, healthy person who has literally no idea how it feels to be 33 and feel 100. Working out what you're entitled to and applying for it. Paperwork. More assessments.
Then there's learning to navigate a previously well-known world in a whole new way. Working out your baseline. Learning to pace and try to prevent symptom flare ups. Riding the highs and the lows without ending up crazy. Learning to be kind to yourself and accepting of your new limitations. Carving out a new life for yourself and your family.
So yes, I have a full time job. A bloody hard one. But, like with many jobs, I have a team beside me. I have a fantastic GP. It has taken years but I now feel I have a base team of consultants who talk to each other and who I trust to do the best for me. A surgeon who I now know a little better than I would like and who always takes the time to chat to me and reassure me. A specialist pain consultant who doesn't take any nonsense from anyone. A neurologist who understands my condition. And a private physio who is helping me combat my biggest problems with mobility and pain and not simply saying he can't help or referring me somewhere else.
And then the most important team members of all, the ones who make it all worthwhile. I couldn't do any of it without my brilliant husband, family and friends to share the load.
Without them i'd be retiring from this job too.