Hello everyone who love and care about me, this is a letter from me to all of you about how I am feeling and coping with life lately.
I know many family members and other people are concerned about me so this is to explain things.
I have had a lot of problems with my right leg this year and recently had a cortisone injection into my right knee which has helped. Before the injection I was unable to lift my leg to get in or out of the car or into the house, often needing help from someone to life the leg in or out of the car, due to pain in the thigh, the pain level was usually around a 8-8.5 but is now around a 3.5-4.5 so much better and the pain is now in the knee and not the thigh. Yes there are times I still have trouble getting in or out of the car and house but there is improvement.
The start of the year saw me having pain with my achilles tendon, then it was my right thigh now it is the knee, yes I have bad arthritis in my right knee and my right kneecap has worn away but the arthritis isn’t considered bad enough to see a specialist which is really frustrating.
Let us move onto my tremor, it is as I am sure everyone knows now in both hands/arms and my right thigh and I now have trouble holding a glass in order to have a drink and holding a fork or spoon when I am eating. The tremor in the thigh used to be on and off but it is there most days now.
There is NOTHING that can be done for the tremor or I can do is learn to cope with it the best I can.
I was told that the tremor is a “functioning” tremor, but what does that mean you wonder, well according to Google a functional tremor is the most common type of functional movement disorder in a functional tremor there is uncontrollable shaking of part of the body usually an arm or a leg. It is due to the nervous system not working properly but not due to an underlying neurological disease such as Parkinson’s disease.
Unlike Parkinson’s disease, functional tremor is due to a reversible problem in the way that the nervous system is working.
This means that a functional tremor can improve and sometimes go away completely although there is no “magic treatment”.
Having a functional tremor can be disabling as the movements cannot be controlled.
How about my weight, well yes I am over weight and yes I am trying to change that but no I am not getting anywhere and yes it is depressing but I am at a loss as to what more I can do.
So let’s move on to my emotional state, I could tell you that all is good and I am happy but the truth is that I have a lot of times I just want to cry and hide away because I know my body is falling apart and I feel that it is all too much work and why do I bother. I am told by people who love and worry about me that I am going downhill fast, as if I don’t know that.
I find many days my concentration isn’t what it should be and I am often tired, very tired and it is an effort to do things but I keep trying because that is what I have to do.
I know I am loved and I know my family worry about me but as long as I can I will keep on trying to move and function because as I have told mum I don’t have the time not to get up and do things.
Someone has to get Leo to and from school and take care of him while his mum is studying.
I know I have Kathy-Lee to help me with many of the daily chores and more and more I really need her help but she is not able to drive Leo to and from school so I need to, even if we get him into the OOSH that will only be of an afternoon and maybe Friday morning and afternoon, which might be ok as I am generally ok in a morning.
Honestly I do not know how I would cope without Kathy’s help at times, what does get me down though is Tim saying he doesn’t know if I am able to take overseas holidays any more, even if I am unable to do some off the things I used to do I can still enjoy a holiday.