h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Just found that I haven't posted here for 5 months, so I thought I'd bring you up to date with my situation. I saw the second specialist in September. He asked me lots of questions and had me walk a measured 100m. It took me 4 minutes! He decided I would probably benefit from beta interferon treatment, and I've been having injections since the end of November. I say 'having' rather than 'doing' because I actually find it can be easier if hubby does the injections for me. I still freak out sometimes, but it is getting gradually easier.

As for my overall condition, it hasn't changed much. I still get 'disconnected spells', although not as frequent, and I still tire easily. In fact, as well as applying for Disability Living Allowance, I'm applying for Incapacity Benefit as working is proving difficult. The DVLA has said I can keep my driving licence, but I haven't driven for over 6 months, my confidence is shot and I'm not sure how the spells are going to affect my ability to control a car. I may give up driving completely, except for emergencies, which means it will be impossible for me to go to work. Walking to work is not an option. I wasn't sure how much I'd qualify for on either thing, but a self-assessment test showed that I could get lowest amount for DLA care and *highest* amount for DLA mobility - because I can't walk very far. Similarly, a self-assessment test for Incapacity Benefit showed that I qualify because I can't walk very far or stand for very long, and I can't climb stairs without holding on to something. I don't want to go on to Benefit, but I can't hold down a normal job and I need the money.

Well, that's about it. Life goes on and I'm having to learn to live with what MS is doing to me. Ho hum!

"I don't want to go on to Benefit, but I can't hold down a normal job and I need the money."

I did not want to either. That sort of attitude and persistance will help you get through the harder times. It came to the point of my abilities being similar to yours at that time.

I still have a drivers license but have not driven in geesh not sure, maybe once in 3 years. It may be longer because for years I never considered the last drive to be the last I do not give in easily, and never give up.

Sometimes it is best to give in, when needing help, it is best.
Giving in is not the same as giving up.
You have no doubt learned more subtlties to language and hope.
The fine line between > hope-delussions-reality-magical thinking and slight real possibilties....

Sorry things have not greatly improved for you but nice to hear your hubby is giving your injections to you since you find that betterGlad you can tolerate them and also that you have not worsened. Best wishes for you both.

May 2005

Yesterday was a baddie. I had had backache all day, new development (well, not that new, you know what it's like, you weeble along with stuff till it gets impossible to ignore)

But needed to do essential shopping, luckily i had RK with me, Viking (the boyfriend person) being both incapacitated by raging tooth abcess and self pity "neither use nor ornament" as my grandma would have said.

Anyway, i managed to fall over a crack in the pavement (sidewalk) and went sprawling across the road. Very painful, very very undignified. The worst part is crowds of people surround you, yes, they are probably genuinely trying to help, but you just want to curl up and die,it is utterly humiliating to be lying in a heap on the roadside, most people assume if you fall over, you are drunk and/or stupid.

So now i have massively grazed and bruised knees on top of the backache, oh well, at least so far today (7am, having slept 2 hours); i don't yet have to cope with coughing up blood.Leg cramps so far not too bad, that will come later.

But do have to cope with wide awake boyfriend who is in agony from tooth abcess, he is now chewing painkillers every couple of hours, if you have two people in fairly major pain stuff, life becomes....is "difficult" worthy of a new smiley???

I think i may "ask h2g2" for homeopathic pain remedy. This is becoming pretty damn unbearable for both of us. After a certain point, all that exists in life is temporary relief from the worst stuff, can't carry on like this.
zdt

I see ( on your eyes thread) the Viking got to the dentist and recieved free medications so he should feel better very soon.

Terrible fall for you
Glad you are up and moving, sorely I am sure!
A bloody cough Could be heart disease or your esophagus among other things.

Is it like pink saliva ,clots , steaks of blood?
*If you want to go there of course, understand if you do not....
Hopefully that will stop!

He is now, thankfully asleep on the sofa with hot water bottle clutched to jaw and yoda snuggled up on his lap, TV gently wittering away next to him, so he should be OK till he wakes up in agony in a couple of hours time.

As for me, dunno, just feel the clock is winding down, i am just too bloody tired to carry on much longer. The blood in sputum thing isn't continuous, it's unpredictable. When it happens it's bright red stuff mixed with the usual coughed up yuk. I have googled, it seems highly likely it's lung cancer, if so, fair enough, as a heavy smoker i suppose i asked for it. Certainly i will NOT have tests and treatment, not only can i not afford it, but also hate invasive painful tests, had too many in the past and prefer to accept my fate; i will just stockplile drugs and do the necessary while i am still able to do so (please nobody try and dissuade me from this, we all have to go and i prefer to choose how and when,having made sure all is taken care of, most folks aren't lucky enough to be able to do this.)

It's practical stuff, at the moment RK, bless him, is going out shopping most days, once he goes, it will be me has to do this. If i have to face the fact of possibly ending up in pieces on the road every day, i just won't do it, so will eat less and less, Viking will disappear once the hospitality dries up i am pretty sure and i am unwilling to rope others into being a support system, it's not fair on them.

I asked, begged, pleaded, for some minimal home help, even once a month for an hour or two would make all the difference, i can't bend down to reach stuff in low cupboards any more, or clean the floor, or clamber up stairs to retrieve stuff from attic, or do heavy stuff unless i am prepared to suffer agony next day. But nope, not possible unless i pay for home help...i am not "grave maladie" ie schizophrenic but physically fit (entitles you to 3days per week help) nor prepared to pretend to be worse than i am (on the rare "good" days i am capable of dancing gently for a short time)but on the "bad" days....well, you know what it's like.

zdt*fading out gently*

Thank you for putting my problems into perspective. Lung cancer is something I will never have to cope with (don't smoke, don't go to smokey places) and I live in the UK where health care is largely free. So I'll content myself with bringing the crew up to date on my situation.

The 'disconnected spells' have pretty much stopped and I'm thinking of starting to drive again. I still suffer from fatigue, so the doctor has prescribed Modafinil - a drug given to narcoleptics to keep them awake. It has worked like a charm! I still can't walk very far or stand for very long. What started out as being a result of my MS has been worsened by painful hips - cause not yet diagnosed. It started out with my left hip being really painful a couple of weeks ago; I needed co-codamol to bring the pain down to bearable at first, but it's gone to being just a persistent ache. Now my right hip has started to ache a bit, too. I can't lie comfortably for a long time in any position except my back. I'm not too bad in the morning until I've walked around for a bit, then my left hip starts up. The pain gets worse the longer I stand, and things like bending down to fill or empty the washing machine or tumble dryer also make it worse. I can only use certain chairs (The one in front of the computer is a good one, thank heaven! ) and even then I have to be careful how I sit. My GP agrees with me that it's joints, not muscles (He moved my legs into various positions but there was no pain with the movement.), so I went for an X-ray last Friday. I'll let you know whether the X-ray showed anything when I get the results next week.

This all sounds like a major whinge about something comparatively minor but it's good to talk. MS is hard enough to cope with on its own. This isn't making life any easier. Just when I think I'm getting to grips with things, life comes and throws something else at me.

OK, whinge over. I hope things aren't as bad for Terri as she fears, and I hope life treats everybody kindly.

Hubby and I are going away on a camping holiday. All day he has been gathering stuff together and loading the car. I tried to do breakfast for us - nothing major, just toast, boiled eggs and some tea. While doing breakfast, I wandered around a bit, getting a few things together. I was on my feet for less than 10 minutes, but I really needed to sit down afterward.

I feel so useless. I'm on Provigil to help with the fatigue, and it does work. I no longer need a mid-afternoon nap. But it doesn't stop me getting physically tired if I try to do anything even remotely strenuous. Housework is limited to 5 minutes at a time with a long break afterward. I even need to sit down and rest after I've had a shower!

Sometimes I feel so angry and frustrated, I'd like to hit something or throw something. Snag is, I'd have to expend so much energy to relieve my frustration, I wouldn't be able to do anything after that.

Hope the holiday helps...do NOT let anyone make you do all the cooking, probably with greatly reduced facilities than at home. Do NOT let them persuade you to go hiking around, especially up bloody hills. Do NOT let anyone take away your airbed and INSIST on a snooze whenever you need it.


zdt

Hubby generally does the cooking when we go camping, and I do the dishes afterwards. It annoys me that I may not even be able to do that, never mind help him to erect the tent. No way would he ask me to 'hike around' - he knows it's beyond me, now. And we've recently got some new camp beds that are higher off the ground than our old ones. Getting down on to, and up off, the old ones was getting a bit much for me.

I'm hoping to be able to visit a few places of interest while we're away, but we know that for every day I spend out and about, I'll have to spend two days recuperating.

wish it was me i could do with time away ,

me too, join the club!

zdt

Giving up camping was very depressing to me.
That is what we did most weekends - hardly spent any time in the city.

I kept at it until 3 times in a row it was just too awful a price, no joy to show for it and a long recovery. The ride there is no longer worth it

It was fine for a while because I kept making adjustments. Eventually fine by not doing any of the work ( which I really liked) sleepin up higher , having a chair , not hardly walking around the campsite(no hiking trails) and using the flatest ground we could find to set-up camp and no more than one night.

I hope you can enjoy it for a long time to come Cheerful Dragon.
There are several modifications like not cooking that can help.
For me it was so wonderful to get outside to soak up some nature ,see the stars at night and smell the mountain air.

Plan to sit and shower even if you feel better because it sound slike you need to conserve energy ever where you can Cheerful. We got our shower redone so that I can easily step in,the head is low and I have a chair. Finally I feel the same or possibly ( rarely)better when i get out of the shower instaed of worse.

It was very hard for me to slow down. I know you probably want to accomplish what you can for your own sense of well being. What you are describing is very familiar to me. I have wondered about the medications you mentioned - you are the first to describe your experience with them.

Try not to use all you have before stopping. It was the hardest thing for me to learn, for twinny too. I still over - do at times because after a long slow down I need to feel as though i am accomplishing something. I spent a lot of time saying and thinking I was not getting anything done ( was doing more than now). It can be a bad catch 22 because the more you run yourself down you risk the possibility of the lower function from over doing being the average.

It IS and Was the hardest part.
I am happier knowing for sure something is beyond me than not trying but there is a line where you have to just not do the same thing that hurt 3 times *before that forth time!

well i was brought up on the coast ,when i got married we moved in land so i love having breaks to the coast sea air and all that .

I am seething.

In order to get the medication and medical treatment which has already been certified as necessary for me to continue just existing, i have to go and have all the bloody tests done all over again; my f***ing refuses to certify that i haven't got better, worse or stayed the same; catch 22 is that of course I have to pay for these tests 'cos i haven't got the certification to prove that i am sick till i get the tests done...go fathom.

*Wanders off to delete items from shopping list and examine bank statement.*

zdt

I am seething.

In order to get the medication and medical treatment which has already been certified as necessary for me to continue just existing, i

well theres a new neuro dr started up out hospial i have to have more tests down oh nooooo not the lumber punture again nooooooooooooooo .

Have you had the "let's attatch electrodes to the nerves and see which one makes her scream loudest" one yet? It makes Josef Mengele (torture doctor in nazi death camps) look like

Great fun innit?

zdt

Terri if it is TB - which others and yourself seem to think is more likely than cancer, maybe they will pay for it.

Our state health departments do not want it to get out of hand as in the 50's. They do not pay for much but TB screens and treatment they will because of the public health threat.

Between the two TB is certainly more treatable.
Call the most public health sort of place you have there.

*stop swapping spit until you know*

"Sometimes I feel so angry and frustrated, I'd like to hit something or throw something. Snag is, I'd have to expend so much energy to relieve my frustration, I wouldn't be able to do anything after that."
Cheerful Dragon

Boy can I relate!
Doing something physical was always my way to deal with frustrations.
I would think and do.
By the time I had accomplished something I had thought through the problem.

Sometimes I cussed or sang tunes with the wrong words until I eventually laughed if there was no solution or nothing to be done about whatever it was. Then I would be much calmer plus I had the added bonus of having gotten something positive done.

I'd say that was the biggest hurdle within the whole slowing down thing. Still is. Glad I learned to talk about things along the way. Starting talking is still a bit like pulling teeth (at times) but it usually does help.