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

Regarding baths, I'm not at the stage where I need a walk-in bath yet, but I've found that many baths are just too tall for me to step into easily. We're doing up a house hubby inherited and we went out looking at bathroom suites at the weekend. The bath we have at home is just 20 inches high, a fraction over my knee height. The bath at the house we're doing up is 23 inches high - not much of a difference, but I need to use a step to get into it. We managed to find a bath that was about knee-high, so we'll probably go for that bathroom suite.

I do have a shower stool that fits in the bath at home, but we're hoping to be able to have a separate shower in the house we're doing up. That will have a fold down seat for when I need one. Unfortunately the bath we found doesn't have grab handles to help me get in and out. It will be positioned against an outside wall, so we'll be able to fit a grab rail to the wall. Maybe you could consider one of those.

Yes; a grab rail would work well; i'd feel much more secure! I am trying to get my landlady do do all sorts of work on the house, *if* she ever gets round to it (i've only been asking for 3 years) i may add that to the list; she's a nice lady & would probably be sympathetic, her hubby has "sick" issues too...

zdt

I would agree with the other posters.
A shower and a chair to sit in would be best.

A warm bath may feel good at first but you are more likely to go numb or fall afterwards. Cool off before leaving shower.Overheating can happen quickly and present all sorts of icky feelings and falls.

If you must take a bath due to circumstances, cool off with cool water before moving and have your towel ready to wrap while still sitting so you do not chill.

A chair beside the bath that is *ideally the same height would be helpful to tranfer maybe.

A grab bar is a must if possible.
Vitamin B or a B12 shot would be good, especially if advised!

I've posted this on the P.U.D.D.I.N.G. page and had little response. I'm posting it here, looking for sympathy. I know some of you will relate to what I'm about to say. Last weekend caused such a grumpfest that I had to wait a few days to cool down before posting. It all started on Friday 28th March. I have relapsing-remitting MS and I'm on Betaferon. This means I have to see a neurologist once a year and an MS nurse 6 months later. I saw the neuro on Friday. My first grump is at the eejit who made the appointments. Instead of putting one appointment every half hour, they'd booked two or three people into each half hour slot. That meant the neuro would have had to see 10 people in two hours, which ain't going to happen. I had to wait more than an hour to see him. My second grump is with the neuro. I had a number of relapses last year, but I'm no worse physically than when I last saw him. He actually cast doubt on whether I'd really had relapses because I'm no weaker than last time and I don't move any more slowly. Everything I've read about MS says it's possible for relapses to end with full remission, so I wouldn't necessarily be any worse after several relapses. He also said I should see my GP every time I have a relapse so they can be sure I'm really having a relapse, and so I can be put on steroids to end the relapse faster. I've been on steroids and the side effects from the cocktail of drugs were dreadful. (This is my journal entry about that relapse: http://www.bbc.co.uk/dna/h2g2/alabaster/F12184?thread=477821 )If I'm going to end up on steroids every time I have a relapse, there's no way I'm going to my GP. I've checked the NHS website and, yes, they prefer you to see your GP when you have a relapse, just to rule out any other causes. Snag is, most GPs over here don't have a clue about MS, so what good will it do? The third grump is with a certain furnishing store that opened a new site in Coventry last year. The store sits on top of its own multi-storey car park. On the ground floor of the car park, the disabled spaces are right by the entrance. On the next floor, the disabled spaces are some distance from the entrance. There is a lift nearby, but the access way to the lift was blocked with trolleys, so I'm not even sure if it's intended for use by the disabled. It's probably for returning trolleys that have been left elsewhere. The men who work in the car park said they couldn't believe it when they saw where the disabled parking spaces had been put. Then there's the issue of wheelchairs. Various places have wheelchairs you can borrow if you need one. I've borrowed wheelchairs a number of times over the past few months. The standard varies widely from place to place. I've borrowed them from garden centres and they've been fine. I borrowed one at the British Museum and found the foot rests at different heights. This was uncomfortable and aggravated my hip problem. The same thing happened at the furniture store I mentioned. If people are going to provide a wheelchair service, they should at least make sure the wheelchairs are properly maintained. That has turned into a major rant, and cooling down didn't make a blind bit of difference.

And another thing.

I have hip problems - trochanteric bursitis, to be exact. About 18 months ago I saw a rheumatologist who did cortico-steroid injections into my hips. This dealt with the problem at the time and he told me to ask my GP to refer me back to him if the problem flared up again. Well, it's been getting worse for some time, so I went back to my GP. The GP had received a letter from the rheumatologist and interpreted it as saying I didn't need to see him (the rheumatologist) again. Instead of referring me back, as I requested, he (my GP) put me on high strength NSAIDs. These helped to an extent, but my hips still hurt if I spend more than a short time walking. "More than a short time" includes the amount of time it takes to get round my local supermarket.

I'll be seeing my GP again in a couple of weeks over a different matter. When I see him I'll insist on being referred back to the rheumatologist to discuss my bursitis with him. He may give me more injections (Ouch! They hurt!) or he may suggest something else.

I don't know whether the problem lies in the way the rheumatologist worded his letter, or in the way my GP interpreted it. Either way, it shouldn't take me two trips to the GP to get the result I wanted in the first place.

Sorry I have been away...


I do not understand why you cannot get the injection if it helps.
It is the preferred way here. The NSAIDS have so many side effects.
I had good luck with some, took then 2 decades. Ran my course with them some time back. Loved Viox but they took it off the market. It had some side effects but nothing as bad as stomach ones with others.

I hope they have reconsidered or you are doing better with the treatment they have you on.

Many people get both treatments. There are so many different types and people often have more than one rhuematology problem. Although most are treated similar way the sublte differences and timing can mean a lot.

I have also experienced sloppy letter writing which caused problems with referrals or payment. I know it takes a lot of battles to get what you need. Mostly in the form of facts and letters. I am not sure how much you an challenge a decision there.

From what my GP told me, the rheumatologist's letter said the GP should just give me stronger anti-inflammatories. As I said, the drug (diclofenac) helped, but didn't solve the problem. The information sheet that came with the drug said that liver and kidney function should be monitored if the drug is used for long periods. I'm already on one drug that may cause liver and kidney problems. I don't need another.

Off topic, I recently saw a news item that said that the drug I was given was causing the deaths of white-backed vultures in India, as it's given to cattle over there. (Vultures eat the carcases of animals that have been treated with the drug and it poisons them.) The Indian government banned the manufacture of the drug, but farmers are still using it. Good thing I'm not a vulture or I'd be dead by now.

Ah, but i read that vultures pee on their feet; it's an antibiotic apparently; counteracts the carrion!

(I am able to do that without even trying....yuk!)

Yeah, the relapsing/remittance stuff is pretty much impossible to explain to "normals"...even the types; they just don't get it. Hence the frustration! No, it's not psychosomatic *but* is worsened by stress, & part of the stress is "The System" regarding health care....




zdt

WEll my mind is NOT all here.
I read Teeri post and thought I wrote it but forgot it.
It sort of sounded like me but not totally!
Oh well I have enough mind to realize it today.

*sigh* While I have been away I have had the highest levels of pure frustration than probably ever. Close to or equal to losing job,no money,waiting on doctors, disability, few answers.....Exactly 20 years ago.

Mariiage is the most challenging at the moment.
It is NOT helping me physically to have such a hug stressor.
Hubby keeps thinking he is or will have a heart attack from the stress.

The short story is he is about 10 years back in time(with me)still grieving and unable to hear anything it seems.

Hopefully his counselor will be of some help.
I can tell he is good. That is a relief.
I try and *usually succeed in living day by day.
I feel I can do this by keeping up with life. Keeping current with emotional isses especially, so stuff never adds up and then explodes at the worst time in the worst way.

This is very good at the moment.
All I can do is hope and pray he gets with the current reality for each and for us.
I have said every thing too many times. I have always praised him for all he does to help me. BUTT I am Very Tired. I am quieter , pause longer before speaking and don't expect him to remember everything. I "just want" (HUGE I know) him to catch up to reality. I do not know if he will or what the results will be in any case. I hope he learns that it is a far easier,clearer and realistic way to live.

I hate what my illness has done or brought out in some others at times. Things not directly related to me, issues it brings up for others out of the attics of their own minds and/or the fear of the future.This is sad.

A few people have taken a good lesson from it and bought disability insurance on their own. Some no longer take as much for granted and live more in today, noticing the small stuff sifting through the stuff that needs aateention and letting the rest roll off, knowing he healthier limits for themselves.That is nice.

Gosh I am begining to wander.
Maybe, I do not know if this makes sense.

I do not want to go into a lot of details..
I am hoping from others own experiences that reading between the lines somebody might see some things I do not. Words of wisdom from their own marrital/health experiences would be appreciated.

I never mind simple sayings or quotes. I find a good turn of phrase can get me through , almost like a mantra. I have my standards then have special short term ones. I just say it to myself first,
gives Enough pause to filter or collect when needed, and go on.

Hi cheerful dragon.
How are things 5 months later?

Any changes for the good or bad?

Got any suggestions for me?

Hi abbi. 5 months on, the bursitis is still a problem. I saw the rheumatologist, who gave me another injection. This didn't hurt as much as the first ones, but it didn't help, either. She made some suggestions about other NSAIDs I could try if ibuprofen wasn't strong enough, drugs that don't have the liver and kidney side-effects. She also referred me to an orthotist, in case my hip problems are due to standing or walking in a bad way. It turns out I suffer from supination - I walk and stand with my weight towards the outside of my feet. I'll be getting some insoles in about 3 weeks and the orthotist said I should see some improvement a few weeks after that. The snag is that I don't spend much time standing or walking, so I'm not sure how much they will help. I'm trying to keep an eye on my posture when sitting, in case that's making things worse.

As for your marital problems, I don't know what to suggest. It's not something I've ever had to deal with. Hubby's been very good with my MS and my bursitis. In fact, he seems more aware of my limitations than I am. Or rather, I know what my limitations are but I don't always want to live my life around them. Occasionally I do so much that I tire myself out and it takes me a few days to get over it, but I'd rather live than just exist.

I wish I could be more helpful. I grew up with a father who had rheumatoid arthritis, so if positions were reversed and hubby was disabled I'd accept it and know how to deal with it. The idea of somebody being as out of touch with reality as your partner is something I have trouble with. It makes no sense to me. On the other hand, I know people via the MS Society whose partners have been out of touch with reality in a different way. The minute the diagnosis was made, they left. The reasons have been along the lines of 'not wanting to see their partner getting worse/die early', regardless of the fact they might not get worse and MS doesn't shorten your life by that much (6 years on average). It's very rarely a cause of death.

Stay with it and hopefully things will work out.

I am sticking with it for now.
Glad he is seeing a counselor.
One Dr. says he got stuck where it got to the most difficult he could imagine and stayed more or less. That he can get on but he has to be willing to accept more loss.

I feel we have a lot, there is a good foundation.
We never talk of leaving,no other people to contend with so that is a plus. I know he is trying. Sort of made it difficult for me to push.

It is time to make my arrangements for end of life matters. I know denial can be helpful at times. In small doses it can allow you to come to healing / understanding , when slowly lifted as tolerated. I do not believe a close relationship can with stand a lot of it (denial)as a way of life. Maybe it is just me who cannot stand it!Reality and relating is a requirement of a good long term relationship.

We have been together 28 years.
Married years after I was disabled. Now 18 years of marriage.
I had up and down situations healthwise, after 2000 things have not changed hugely. I was hoping he would catch up by now.

Every body has their limits.
Limits ,unknowns, previously untested waters that are hard to guage.You can have a desire to act or an assumption you will. We can not know 100 percent until faced with a situation.

I am sure he would like more control over any further loss of function and his ability to help. Normal when temporary but not realistic.

Until caught up , I cannot help him as much either It is not as if he has jumped ship. More like he is wandering around preoccupied and confused on a giagantic ghostly ship. Similar to grief.

I will be patient, easier now that he has some help.
Hopefully he is processing painful thoughts and dissapointments to get on a road based in both our realities.

***********
Thanks for listening Cheerful Dragon
I definitely do not want to go on about it too much online.
I know I am not the nly one that have bumps in the road in relationships.

So sorry bursitis is still hanging around.
I wish I had a new idea for you.
All of your appointments sound familiar to me in one way or another.
The shoes sound like they are worth a try but as you said , you don't use your feet a lot! They may help with balance some on a bad day, if you have any balance issues.
Best of luck to you.

"The shoes sound like they are worth a try but as you said , you don't use your feet a lot! They may help with balance some on a bad day, if you have any balance issues."

I've always had balance issues! It took me ages to learn to ride a bike. That's probably more to do with the way my brain processes information, or lack of confidence, than my feet, but I have also had problems with things like walking along a narrow board or painted line. I'd fail a field sobriety test even when sober! Focussing on the way I walk, I can sense the weight being pushed outwards and, yes, it does affect my balance.

As for sitting, yesterday I found that the pain was worse if I sat with one leg crossed over the other, and if I slumped. So from now on I'm going to sit upright and not cross my legs. Pelvic tilts also help to ease the pain.

-----------------

It's good to know your relationship has a good foundation, but sad to know your partner is stuck in the past. It's a pity he can't be dragged kicking and screaming into the present - you've had to live there alone for so long. I hope the counselling is effective and that he joins you in the present some time soon.

It's the "aloneneness" that realy gets to me. OK, I've ben technically alone (ie dead family) since age 11, but that trained me to be very independent.

I *hate* asking for help. If they offer me a wheelchair; that's it; i have ways of saying "thanks, but no thanks" Mechanised bike for hills or a donkey to make them laugh, OK.

I hate that today i got arthritis in not one but both hands & asthma thing at same time, couldn't move, sat there spewing mucus & unable to tell anyone what was happening.

I can't stay in France, the chances of being able to explain to docs what's wrong are too remote, even with reasonable command now of langiage, it's not technical.

But i would prefer to live alone (apart from Yoda, who fully understands, believe me!) than in some sort of institution; beeen there too many times, fought so much for independence i'm not gonna let a thing like this get in the way.

Yes; Abbi; prepering for the inevitable is part of it, it's what i'm doing now.(Hence precarius decorating) The biopsy is "supposed" to give more clues, i bet it doesn't, just means more hospital visisits & pain & i won't have it. The last 6 months i've gone from being just someomeone with a few physical probs (let us dare not use the S word which ends in P!<wink) to someone who can't always even get upstaoirs to the looo quick enough. Vision & hearing going (great for ?<musican) Stilll have a million ideas but i simply can't physically do them; something falls to the floor & it's a major tragedy>...basically, all i want to do is sleep; i keeeppp remembering what you said about "pace yourself."

Soc Wkers maybe realise (after me fighting, screaming, crying, writing it down in translation etc) that i do NOT want sympathy, i want practical help, i want someone to come & help me clean the house, i want a reaosonably independently appearing form of transport which is carbon fiendly.


I want a smalll but efficient portable computer.I could work then, i don't want their bloody benefits! I want a downstairs toilet. I wannt the insulation sorted so i don't freeze in Witer & bake in Summer.

I hate i can't type properly any more; me, the spelling champion, someyimes cant spll her name!

The credit crunch thing *had* o happen; we all have to cut back on nn essentials, i am used to this & can existon vey small amounts of food; give up smoking/drinking if not worrying about me/my cat/my house getting destroyed. Don't care about clothes unless they actuallly smell!
I would love a tiny piece of land/courtyard etc, so i can grow my own veg, dream on.

An understanding partner who hasrespect enough to do as *you* ask him; rtather than what *they* fels should be done & is a cause of further worry & acknowldegement of your deterioration is a rare breed; let me know if you find one & if he has a twin!

"Anorexia" says the doc on my application for benefits. Yeah, you try hauling shopping up that hill & you might discover it's not done for vanity, but "which is the lightest/cheapest item to carry in a small container & is qick & takes less electric

I'v' a list of 28 items i "should" do today. I reckn even "normals" would find that rather daunting. Plus i'm scared to go out in case his nibs decides to break in & burn the place down/tortutrture cat to death etc.

But on plus side, afte 10 days, i now have kitchen light & some heating, via a friend NOT the landlady.

Energy finished, back to bed for an hour then i'lll start tackling it!

Good luck, Abbi, bets are still on: re-asesss after the 18 Oct & my biopsy!



to us all


Terri

The bet huh? Yep if I remember correctly.
Hmm still could not guess at this point, no sure bet for either.

Well, you can bet we are pushing to give the best we have.
You can bet we know we have to be happy with our output when everyone is is saying no do MORE or LESS ,or black not white.....

The phrase I am most tired of hearing from the same people is :"I should do more for you"

If they said "I could do more for you, and then not, it would feel a bit better. They would claim their responsibility for never offering in reality,rather than laying their guilt or whatever it is at my feet.

I do not believe in shouddin all over oneself and do not want to be a motive for others to. It is like I have too many politico types in my life.

Just do it or not. I have long gave up expecting anything useful from those folks so it does nothing positive for me to hear it........again. Leave out the all shouddin! Please Peepers

Felling like a big steamy pile of old crap because nobody accepts any sort of help from me. Except for roomates, the 2 have done well with a bit of help but we are tired. It is all the more easier for me to be invisible. We have to be done with that once this one goes. 1 more month

Cheerful Dragon
your comment.

"I have also had problems with things like walking along a narrow board or painted line. I'd fail a field sobriety test even when sober!"

My twin and I have always had the same issue.


Yep, crossing your legs is not good usually.
I sit with a straight back but bent forward from the hips, never the waist. When I lean back I tuck by but under , like a standing tilt.
It may not be helpful but I often sit with knees up by chin as an alternative, but tucked then too!

Thanks for your wishs and listening.
I did drag him to counseling ,kicking and screaming so to speak.
He has stayed and seems to feel better afterwards.
I know from my own experiences which were good (therapy) It is a process not fixed in a moment.

I hope the insurance will go past another 6 weeks.
I am afraid to check the benefits just now, and no point.
If something more is needed we can figure it out then.

Regarding benefits, I was turned down for Incapacity Benefit because I didn't have enough appropriate payments in the previous 2 years. I hadn't been working during that time, but hadn't signed on for Jobseekers' Allowance. Silly me, I didn't want to be thought of as unemployed (I was a software contractor who couldn't find work). I could sign on for Jobseekers' Allowance, but I'd be expected to apply for jobs. Being disabled, I know I have no chance of getting a job, even if I could find an employer who looked at what I can do rather than at my experience. The Disability Discrimination Act was passed in 2005, but an employer can find any number of reasons for not employing a disabled person, without ever mentioning the disability. My MS nurse has advised me not to work, as the stress could make my condition worse. I'm not sure I could explain all that to a 'Disability Employment Adviser'.

So here I am, on less than £400 every 4 weeks. That's Disability Living Allowance, a payment made to help disabled people with their extra needs. It's not a benefit, so I'd get it even if I was working. I'm trying to encourage hubby to take out life insurance, as I'd be really stuck if anything happened to him. Right now we can't afford it, though. Maybe when we've sold our old house.

Totallly agree with all you say.

I'm incredibly lucky, they found my purse with ID in it, so i can get meds etc & even more lucky a guy found me(!!!!!) online who seems to actually understand (& pays for own 8 hr phone convo & flight out to take me away for the weekend once the nasties are over)

This may seem a bit Pagan, but i agree when he said:
"much of "organised" medicine is a ripoff, most ailments are your soul crying out in its own way for someone to "be there" when neeeded & let you get on with the pain when you need to retreat & understand the idea of pacing yourself"

And respect if *I* ask for help, there is pride involved; do what's asked for, no more. So he's taking me away for a weekend of nortinesss, hugs & curry, talk, but not heavy talk & general TLC once the hospital yuk is over. I can't wait!

Abbi, i do hope T gets through alll this with that sort of attitude.

The benefits thing is almost criminal; especially when you see designer outfits, Botox & refusal from national health Service to pay for meds which have been proved to cure/prolong a reasobly independent lifestyle. I doubt any of us are praying for a 100 yr lifespan, just a decent one while we are here.

Zen, positive hoootooo vibes to all. They do actually work!



Terri

Cheerful if it is similar syatem and it seems to be.

I would advise you to try 1 or 2 jobs, however brief they are.
When you have tried and have an understanding employer from the start. One with the knowledge of your condition and knowledge of the bigger picture. You get a job saying you do not really know for sure but you feel you must try. Vacations or pregnancy issues often are long enough to try and less stressful.

After a real effort that comes up short fro the employer it will begin more work history documentation
.
One thing a person must do here but is rarely possible is to supply a resting area for you to lie down if fatigue is a major problem.

My sister did this, expecting to work longer but it made her crash in the dirt bigtime. She drained herself every which way. A a job will be more stressful unless you really get lucky. The stress presented on an average job can be too much.

Having An employer who is willing to cover all the bases , and finding you realize you're unable to be gainfully employed is one that can document your problems. A time card with the number of days you were unable to complete your job, whether you wre present or not is valuable. Here I believe the reliablity factor is huge and missing more than 2 days a month is not deendable employee and if it is due always to health then you are unable to withstand the sedentary job. The amount you make in a month is very important too. The cutoff is set probably. SO if you are fortunate t be highly paid and working part-time you woul dbe out of benefits. A part time job at low wage is different. They will want you working at what you know first, then trying a lesser position as far as low activity-sedate job. If you are incapable of be reliable at a sedate job you are generally disabled.(ethics assumed)

It was a long and dark period for my sister. She believed she could work. She delt with the "knowing" which is a crisis and the paperwork and fear of applying for the 3rd time. Years had passed since her first attempt. She did not have enough work credits all in a row because she had been struggling to work and continually crashing. My story was the same.

The good news is-
If you have applied and denied and you continue to fail to be a consistent worker it initself is good documentation. For twinny and myself those were some of the most painful times.They were a decade apart. We prided ourselves on our work ethic. It felt like giving up but a time came when each had to give into reality without giving up on life.

That was exhausting! Hope it makes sense , mistakes and all

THanks Terri!
I do give a hoot
Many wishes and positives energy are headed you way.

You too cheerful Dragon!