Hello Dave.
I was diagnosed three years ago out of the blue, aged 55. No real symptoms. No warning. Three episodes of partial paralysis in as many days saw me unable to get up, sit up, grip anything. Ambulance, A&E, all sorts of tests and MRI, ward admission Saturday. Monday morning I was given the news that I had MS.
The first year I was in denial. I made a great recovery and was back to normal. So I had MS! It made no difference to me! I could still walk albeit a bit gammy. I could still drive, climb a stairs, walk in the sea, splashing my grandchildren, do real physical work in my garden, go up the steps of the plane on my frequent “solo adventures” abroad.
However the second year saw gradual changes. I was falling a lot so began using a wheeled walker, when the crutch wasn’t enough. . Tears and tantrums were frequent. Still are. I would swear like a Trouper and started to become cynical, angry and bitter. I was no longer a pleasant person to be around. My husband, who is now my registered Carer, should be canonised as he truly has the patience of a Saint. I still cry sometimes when he bends down and puts my socks and shoes on, or sometimes has to haul me up from a chair when I can’t get up.
My third year, and now I can only shuffle indoors with the walker. I need a wheelchair for anything else. We have a manual one for going on holiday. I use the motorised one for outdoor use. I can no longer drive. We live down a lane, with an acre of garden, in a rural area in South West Ireland. Our retirement dream. The goal we had worked so hard for. I still feel cheated, angry, but not as often. More sad now. Sad for what I’ve lost, for what I can/will never do again. My right hand has weakened so I struggle to butter bread, cut, slice, chop… pull up my pants in the bathroom. I still have tearful days. I expect I always will.
I was a strong, confident, feisty, outgoing, witty, independent woman, who feared nothing and was capable of any undertaking. Where has she gone? I miss her and want her back!..but she’s gone and she ain’t comin’ back. I try to look for the positives here. There are some! I am grateful I can manage in the bathroom and can still pee and poo independently. I try to be grateful I am still upright and can shuffle. Grateful I can still manage a shower, just about. Grateful I can sit my bum on the passenger seat of the car (while hubby lifts my legs in) and be taken out somewhere. Grateful I can still manage to put a meal together. Grateful I can still go on holiday abroad, with the help of Airport Assistance and hubby. Diagnosed with stage 3 breast cancer before christmas and had successful surgery and treatment, I am grateful I’m still here I suppose. Happy Clappy? Definitely not.
Having MS is sh!!t Dave, make no mistake about that. It’s like a thief in the night. It steals in and takes without asking. When you think you have accepted that, it comes back and steals some more. The next person who ever says to me, “We have MS, but MS doesn’t have me”, is going to get a quick smack in the mouth!! It’s here to stay, and doesn’t intend to leave anytime soon, like an un welcome, un invited stranger. Do keep the communication between you and your partner open. That is crucial to try to understand each other’s feelings. So no, no Happy Clappy days from me!
From my own experience, the sooner acceptance is reached, the nicer life becomes. This is a great place for venting/crying, griping and even sharing a little fun. Some days are better than others. Do remember that. I say I have bad days and not-so-bad days, then I have F**k Off days! I give fair warning and tell people in a soft growl, I’m feeling “fragile” today and just don’t want to communicate. And that’s okay too…