Hi everyone!
I hope you are all well?
So continuing my update here are some more of the things that I've been dealing with!
My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food. I have a very weird sensation in my left thumb which feels as though it's numb but a strange painful numbness. It's hard to describe, it's not an acute pain but a really odd altered sensation that I find quite bizarre.....but that's my body for you! 😂
I started having trouble with my bowels quite soon after I was diagnosed with MS & for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok, well unfortunately that has changed now. 😞
I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?
We had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Meniere's disease and had helped save Martin's life in 2012 by getting him diagnosed with Whipple's disease (not to be confused with Whipple's procedure!) retired.
Fortunately, now we have a lovely GP, who prescribed me some water tablets, one for water retention & one for bladder weakness, which have been very useful and I'm thankfully able to manage it a little better! In the meantime she also got on to the Bladder & Bowel service and I have had an appointment through for the end of November! 👍 Fingers crossed that they can advise me on the best way of managing the issues I'm having with my bladder.
I have always experienced neuropathic pain, in fact that was one of my first symptoms and I can genuinely say that I haven't had a day without pain since it started back in 2002.
It's a very bizarre sensation and one that you have to learn to live with or it will drive you crazy.
I have pain all over my skin but it started along the bottom of my feet, my legs and my lower back. I have always said that the pain along the bottom of my feet is like when you are walking along a beach that has that gritty kind of sand.
My lower back is a sensation as though someone is stabbing you with a handful of pins. It is a type of burning sensation.
I also now have a buzzing sensation, all over my body, as though someone has plugged me into the electricity.
As I sit here and concentrate on it, to describe it to you, it makes me feel quite sick, so I try not to think about it too much!
I have realised that I am now needing to use more equipment to help me with everyday things. I found this really frustrating and I would get really annoyed about needing to use things but I am slowly realising that these things are there to help me and I shouldn't look at it as a negative. It is allowing me to continue doing things myself or it is conserving my energy so that I am able to carry on doing things throughout the day.
My one big example of this is that I am still getting around by using my crutches although over the past few months I have been finding that a lot harder. I have an amazing electric wheelchair at home, that I have been very reluctant to use because in my mind I feel that once I start using it I won't stop! My thought has always been to keep staying on my feet for as long as possible and that the reality is that I'll be in a chair soon enough so I've never wanted to "give in". I'm now realising that by pushing myself to keep using my crutches hasn't been as useful to me as I thought it would be. By staying on my feet I've been pushing through pain, which is exhausting, and I've been using up energy that I haven't got. So I'm now using my electric wheelchair a lot more and have accepted that it is helpful and I'm not giving in at all!
I am trying to learn that not everything is a negative too. I have always been getting frustrated at what I can't do but, with help, I am learning to turn things around and look at what I can do instead.
I am needing to ask so much more of Martin, which I have found difficult. Not because I can't ask for his help, far from it, he is the one I always turn to. But I was always taught to be as independent as I can and to stand on my own two feet! So being in a position where I can't stand on my own two feet, sometimes literally, and that I have to ask for help has been quite challenging for me. I've never been one to sit there and let someone else do something that I could do but I'm now having to do that and that is a hard thing to get my head around! My head is my own worst enemy a lot of the time because I can see things that need to be done but I can't actually do them myself and have to ask someone else, which most of the time is Martin, to do things for me. I'm realising that trying to do something that I can't do is putting me at risk of having an accident and causing more problems which really isn't much help at all!
It really can be easier said than done and it's a hard and frustrating lesson to learn but I'm getting there........slowly! 😃
Sending love and Rosie cuddles!
XxXxX 💕
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