“Life is good, just different”, is my oft-repeated mantra. And it’s usually true, honestly. Nothing Multiple Sclerosis has thrown at us has got me down for long. Well, maybe the excruciating nerve pain, a bit. And the phase when I was self-injecting every other day, each time basically giving myself the flu for 24 hours. Meh! I have a loving and much-loved family, a loyal, funny and indulgent set of close friends, and dashing good looks. Maybe not the last bit. At least my funky red wheelchair turns heads.
Right now I’m in a bit of a wobbly phase. I am yawning my way through bouts of fatigue, increasing nerve pain attacks and a more-rubbish-than-ever bladder. The less said about that last one, the wetter! A break in the mad bad weather has been a little helpful already. We Brits do love a sunny day or two. Even a week. But it’s not so long before we start yearning for the rain that we’re famous for, and secretly proud of.
A rain-dance of sorts is all the more important for many of us with Multiple Sclerosis. We are quite simply floored by heat, and just like another symptom, overwhelming fatigue, it is almost impossible to explain. “Yeah, me too,” is the constant refrain. Hard to answer that, and harder to quantify. Every MSer is different, but personally on those ‘lovely, sunny days’, I can move less, I can think and concentrate less, I speak less and I try at least to sleep more. Despite spasming like a jitterbug.
Last year we took a momentous decision to leave our dream home and start again by the lovely south coast. The area is beautiful, the schooling here has a great reputation and Mrs W was feeling an overwhelming need to be nearer her family as my condition deteriorated. I was fine with the idea, but really didn’t think it through or prepare for it. Overnight I lost an accessible home, as well as my MS ‘network’ of health professionals and friends. And I stopped being in range of a pressurised ‘hyperbaric oxygen’ tank for my weekly dose of pure O2. My own family were also suddenly out of ‘quick coffee’ distance, just as we were all grieving the loss of my sister. All a bit surreal, all a little overwhelming.
I’ve had to come to terms with the fact my health is a notch or three worse than it would have been had we stayed. Nobody would be able to tell me by how much. No point looking back now, though that is what I have been doing. Slowly but surely, I have rebuilt something of a support network.
I’ve got a part-time marketing job with upugo.com that I can do from home. Great company, lovely boss.We have a regular stream of very welcome visitors to our abode, and to the brilliant pubs and restaurants overlooking the sea. We’re having some great adventures. Too much fish ‘n chips and calamari. Our two children are fine, with our youngest in particular absolutely thriving.
So what am I complaining about? Onwards and upwards! (And please keep visiting, lovely friends. You’re my oxygen now!)