Dealing with It

[leteeters]

I have a hard time dealing with the fact that I can't do the things that I use to and getting other people to understand that. I am able to walk, drive and do most things but not always. Quite to often this Tam knocks me down and I am unable to do anything. My TAM seems to be getting worse with each year that passes. >:(The muscle pain is a constant all over from head to toe. My mom is disabled and lives across the street from my wife and I and she expects us to do everything for her regardless of how we feel. I have been trying to get her to understand this for two years now and my mom refuses to get it. My wife and I have a hard time just trying to take care of each other some days are bad some not as bad but its always hard. I want to be a good sun and help my mom but most days I can't even help myself. All of us being disabled leads to lots of frustration for everyone. The property where we live needs up keep and I just do not have the strength to do it any more so things get left undone.
I look fairly healthy but I am a long way from being healthy or feeling healthy and its hard to get people to understand this even my family members don't get it. I was just wondering if you folks have this problem as well. Thanks for letting me vent a little.

[georger]

Well, I think that will ring a lot of bells with most of us. Not being able to do things that we used to happens to everyone if they live long enough, but with us TAMites it's at an all too young an age. And it's a smack in the face every time you lose some ability. It's serial grieving. I've seen TAM described as sometimes non progressive. What does that mean? You wake up one morning and you're disabled and it never gets worse? What nonsense. As my doctor says, everyone gets worse, and when it happens it's normal to feel down. Anyone who doesn't is abnormal and we've enough of that without adding to it.

When there's nobody in your household who's thoroughly abled, you really notice it. As to your mother, it's almost in their genes not to listen; they remember us as young whippersnappers. It's my major regret that my very elderly mother will not take my advice and I'm not able to help her as much as she needs.

This may be heretical, but TAM is not all bad. I'm not one of those "love your disease" weirdos, but it's good that nobody is to blame for our disability. We did not crash our cars while drunk or texting. We didn't get run down by some drunken scumbag. We were born with a dodgy gene and it's all part of the deal. I used to work with very severely disabled folk who couldn't even scratch their nose; we're all athletes by comparison. The good humour of those folk had to be seen to be believed and it did me a lot of good. But I bet they had some dark moments in the long hours of the night.

On a lighter note, I wouldn't have watched one movie a year once. Since TAM I have to rest a lot and I've seen so many magnificent movies. And there are huge numbers of high quality docos coming out of the UK and US. Can you believe they tracked down and interviewed the British Army corporal who, in 1945, heard the crunch as Himmler bit down on his cyanide capsule?

Thanks for your post, mate; it gave me a chance to have a good rant and I feel better now.

[leteeters]

Thanks for the reply. If you like movies one of our favs is a movie called Second Hand Lions. One of the main characters is Robert Duvall. Just google it. It's a feel good movie. Oh and Michael Caine. I apologize for the typos on the previous post the brain and the fingers get mixed messages sometimes.

[leteeters]

On another note my hands are doing the same as your hands. I love to play guitar but its getting harder to play because my hands hurt. Come to think of it its hard to do anything with my hands anymore and its getting worse. You can try Voltaren Gel it helps a little. This is very strange because its like this stuff (TAM) is spreading it is starting to affect my ankles and feet as well.

[Craig Lane]

I have to concur with you both. Trying to get folk to realize what you can and can't do is an upward struggle more so when you have TAM upward becomes a four letter word. I like flat. That's the problem with unknown disorders. Tell someone you've had a heart attack or a stroke they have a fair idea of the mess you are in, tell them you have TAM and they assume they have misheard and you are discussing the contents of your sandwich. "Never heard of it" and that's just the doctors. "Well, you don't look ill". My advise, only do what you feel comfortable with ( or you will pay double for the next few days/weeks) look at all the jobs that need doing and meticulously plan how to go about them (for as long as it takes to save up and pay someone else to do it). Discuss your plans with anyone who'll listen and of chance someone will have a better idea and demonstrate by doing it for you whilst you eagerly stand around offering words of encouragement and support (if you can the odd cup of tea can give the impression of business).
As it is a chronically degenerative disorder I don't expect anything to get easier but, accepting that is getting somewhere toward dealing with my own restrictions. It is not easy (especially for a man) to accept limits to ability. Many of us have been athletic and adventurous in younger days superseding others abilities making it so much harder to accept limits and assistance from mere mortals.
Mums are there for us always and when we can't do something to make their lives easier it is easy to beat yourself up for it but if you can't you can't you need to say. "I can't". It is difficult so go practice in the mirror. The alternative is find a local teenager willing to show of his prowess and point him at the job. A teen relative is best but they are usually sullen and sedentary toward family. Cash is always an issue especially in this current climate but a little in the right place and time can be a great incentive.
Thanx for the tip with the Volaren Gel I give that a go. Maybe I'll be able to write a whole message in one go instead of in bits in "word" and cut paste to our website. Downside of current method is I tend to ramble as I have time between to think of more s**t to say.

[Craig Lane]

Feel free to add punctuation as and where desired. I seem to have forgotten most of it or just take a deep breath, TAM permitting, before you start.

[leteeters]

Craig you have great humor thanks.