Today I noticed on one of my Facebook sites that I follow called, Men with MS that they are having conferences in large cities for discussions on how MS affects men in a number of different ways. In this post I will cover some of the things that I would want to bring up were I able to attend one of these are functions.
Of Course there many physical issues that in my case are extreme compared to many MS people. I have lost the use of pretty much everything below my neck. I still have feeling but it is numb a little by tingling and neuralgia. Like if I spilled hot liquids on myself I really have some wild spasms. When I am waking up and change positions a little bit my arms and legs spasm and my hand spasm into fists. I am bound in a wheelchair all day, put in there by my wife in the mornings before she goes to work. I can no longer drive my chair but I found a voice software and a program called Smyle mouse where the mouse cursor follows my face. This gives me freedom on my PC. I can no longer use my fingers so I cannot run my phone, use the PC keyboard or a TV remote. My son comes at 1 PM to check on me and give me lunch. So how does this affect my manliness? Hopefully this doesn't come across as sexist.
I am 60 years old and been married for over 35 years. I have always been the one who took care of home maintenance. This stopped about 4 years ago totally. There was number of years where he could do some things but not others. This has been one of the most difficult part about my disease. Instead of just doing things or fixing things I now have to communicate to others what need to be done or more difficulty to stay out of it and leave it for others. I went from having and using dozens of tools and knowing where I kept them. I can't say I was real organized but I usually knew where I left the tools I needed. Now they are all over the place and I don't know where any are. I still have to describe certain tools for people to use in certain situations. I find I'm not a very good communicator.
One thing my MS as affected is my diaphragm and I speak very weakly. The right side of my face is also numb due to a procedure done for my trigeminal neuralgia. This affects my speech also.
One of the longest time wise symptoms I've dealt with his urinary problems. I had trouble voiding my bladder and so I would go to the bathroom quite often. Since my arms quit working I have had to go to an indwelling catheter. You might wonder how this affects my self identification. The frequent urination did but the catheter and bag, not so much. I have given up the use of this area of my body many years ago. Of course this has affected my masculine identification but that was a few years ago. Took about 3 years to accept it mentally. I still think like a man but physically I'm really not anymore. Also a few years ago I require a ceiling lift to get me in and out of bed as well as holding me over the toilet. This used to bother me a lot but anymore I have pretty much lost any sense of pride and just take whatever gets dished out.
Lately I've been wondering how much more can this disease take away from me? I suppose there is something a can but to me it seems like it's taken most everything. I miss my hobbies like kayaking, fishing, biking and hiking. If I go anywhere someone has to drive me into my van and it sure seems like a lot of trouble. I get out once a week or so and have a beer or 2. I read a lot and try to post on my blog so people know how I'm doing.
So I gets and summation I feel like MS has made me much less of a man and more of just a person. My brain still functions like a heterosexual male and this shows up in some of my dreams but less and less as time goes by. I tend to have dreams about still working and when I wake up it takes a while to remember that I don't go to work anymore. I guess that's one area that still bothers me. No more work means I'm now on Social Security disability with some disability money from my job so that I get 60% of what a used to make. It is been difficult to transition from the pay of working to the pain and disability. I don't envy anyone who has to quit working.
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