Sitting for long periods...

[Spireite]

I've got a stool thing like the above and it was comfy 20 years ago before I had a back problem. You can still choose to slouch on it, and my problem is I can never sit supported (except in my poor old car living on borrowed time) and it would be better for my worn out back muscles if they could occasionally have a bit of a rest during the day, when I’m not driving. I am looking to be able to sit supported.

Yes Gila the AtW woman greeted me with the 'you haven't got a medical condition' instead of 'how can I help you?' Maybe I am a bit in advance but that doesn't excuse such rudeness and I was only doing what my more helpful DEA told me to do. I have to see my DEA again next week so I'll be telling her what happened. We suspect building a chair could take time.

Following my appointment for a 'PASSENGER SEAT ASSESSMENT' with an OT of a charity, as above, I have just read her report and I'm fuming. She insisted on sending it to my (useless) GP and I resisted cos he doesn't know which planet he is on, and would put two and two together to make 50 or more, but as we had discussed me having a blue badge I thought it may help should I decide to. I also thought I could forward it on to my one good consultant to raise the SITTING issue. Instead, there is no mention of the blue badge and it is entitled in big bold letters ‘DRIVING ASSESSMENT’, which it wasn’t. ‘Please find enclosed a copy of your Driving Assessment Report’. I had copious emails and phone calls with a few people to ensure everyone understood the generally unfamiliar problem of seats being too deep, before I agreed to part with my limited cash for an OT to help me with my SITTING problem (and much cheaper than a driving assessment).

No point sending it to my good consultant cos there isn’t much about SITTING in there. There are sections for introduction, present lifestyle, mobility history, physical assessment, options. It waffles on about how level my driveway is, spurting (don’t ask me), how I care for my mother (no I don’t), but is completely riddled with factual inaccuracies on irrelevancies, although ‘the therapist did not consider her medical condition is affecting her ability to drive so she does not need to inform DVLA’. Fantastic, but not what I paid for in a passenger seat assessment and what makes this stranger think they are in a position to even comment. ‘I demonstrated full range of movement strength and coordination in all four limbs which are considered suitable for all round observations and postural stability.’ Did I? When did I demonstrate that then? Just by standing there? And what has that got to do with what I paid for, ie sitting in a passenger seat of a car, bus, taxi etc? ‘Range of movement at the neck and trunk was sufficient for all round observations and postural stability.’ What has that got to do with sitting in a taxi or bus? How does she know? I was never asked to demonstrate any of my ranges of movement! And so it goes on and on and on…………..

I can send it to Motability if I want! Why? I can’t get motability cos I’m not on DLA as she has reported.

I’m thinking of emailing the first OT I spoke copiously on the phone to who convinced me against much resistance that it wouldn’t be more money wasted on top of all the previous money I’ve wasted on this issue. Does anyone have any other ideas? I really despair.

HOW DO I GET HELP SITTING?

[Stone]

Wow, you're not having very good luck with this, are you? You seem to have got the rubbish ones from all over! Maybe just keep ringing AtW and take your chances with a different operator?

Start to finish it was probably about 8 weeks, but some of that was having paperwork slowly faffed around by the work OH people, they don't have much of a sense of urgency. Maybe I should clarify it's not totally custom, more that they have 5 or 6 sizes of each component (plus different foam types) and they mixed and matched to fit my measurements.

I'm not convinced about the kneeling chairs, I got one second-hand (it was only £10 so worth a punt!) and like you say it's too easy for me to slouch in it to make a good fulltime replacement chair. I used it for desk work at home so I had a bit of a change from the chairs at uni, variety is good for you and all that...

Your OT assessment sounds quite strange, did they set out what they were going to do beforehand? If so it sounds like you should be claiming your money back as you didn't get what you paid for!

Stone

[Tiz]

Seriously don't rule out the back friend, if feels more arched than it looks, but maybe that's just me. It is also very light, I'd be suprised if you could get anything custom made that was lighter. Not sure what to do about car seats but my office chair is adjustable every which way including the seat can slide back and forth in relation to the chair back so it's possible to reduce the depth of the seat that way. Do you know what seat depth you can manage? I could try to do some measuring for you.

[Spireite]

I have got a backfriend. It isn't arched enough for me in all the right places and doesn't reduce the enormous depths of seats. I dispute strongly that it is light. I find it gets heavy rapidly and strains my fragile neck as I have to lug it on three buses, well compared to firm cushions I prefer to lug.

I prefer a seat depth around 35cm and no car seat is at all close. Office seats may be adjustable but never adjustable enough, ie to 35cm.

I have rung the first OT who of course didn't 'get it' to start with. (Drives me nuts how everyone wants to help with problems I haven't got but not with the problem I have got.) I spent ages on the phone with her til she did 'get it'. Then I got passed over to this other OT. Now the first OT has 'lost it' and gave me a lecture this morning about how vital (matter of life and death really?) how level your drive is. But what has that got to do with me sitting in planes, trains and automobiles? I despair. I paid them to help me sit in vehicles.

The trouble is 'sitting' doesn't fit into any of their categories on their online form, which had many other problems. Hence we had lots and lots of conversations and emails to decide I should tick the box for 'passenger assessment' even though normally that is all about getting in and out of a vehicle to them and not when happens inbetween. That really is a big black hole. That was on the basis it certainly wasn't a driving assessment of any remote kind, and their other assessments involve driving. There was no assessment of me or my problems or my medical condition she knows nothing about.

What makes them think I'd want to pay for a report to tell me how level my drive is and what benefits I'm on and other stuff I know? Don't they realise I know already? I told them. I paid for help SITTING. How do I get it? They told me about the backfriend which I already have, and they showed me this man-sized beanbag, which is new, but I couldn't lift, can't carry on the buses, can't bend and twist to put it in place, and then prod around with the beans for 10 minutes to get them where you want them for multiple bodypart reasons (bending and twisting, spine, neck, pelvis, fingers and thumbs), then you have to bend and twist to fix the pump to suck out the air, then you have to hope it is how you want it.

So they think good job well done. But I have gained nothing.

[Tiz]

I take your point about the backfriend, I've never had to carry mine far so its weight doesn't have time to take full effect. I measured my chair, you're right, you're never going to find an office chair that's shallow enough, I really think you need something custom made. I also think you should be entitled to your money back for that useless report. I wish I knew what else to suggest, I don't blame you for being so frustrated, I'm now feeling very frustrated for you.

[Spireite]

Thanks for your support. I do wonder if I’m totally mad at times and why people can’t see what I see - why the levelness of my drive has no effect on my sitting in planes, trains and automobiles and busses......

Sorry I was a bit hasty. I do have a chronic 10-year old neck problem also which got no help for 8 years, so I may have more problems than average carrying. It was all I used to be able to do to hold my own head up, never mind carry anything at all. I think helping one end of the spine will help the other, but it won’t make seats any less deep.

Reward to anyone who can help me sit, but on condition the shock doesn’t kill me, which is most likely.

I shall still email my ‘good’ consultant and not attach the useless report to highlight the unrecognized problem of sitting.

I've just had some good news from my MP (about our utterly appalling local non-existant medical services), so maybe I should get him on the unrecognised problem of sitting next? Maybe not!

[MikeJ]

Wow, reading all these is amazing.

Sitting for me is the absolute worst. And the worst of the sitting is driving, followed closely by typing and sitting on a plane. So bad that for 3 years i did not go to a movie, I had to move to be close to work, and didn't go on a car ride longer than 15 to 20 minutes for years. Now, after years of training, I can sit for extended periods, but i'll pay a price the next few days. After a bout of sitting, my shoulders will hunch, core disengage, hip flexors tighten, neck and lower back stiffen, pecks tighten, and i'll be stiff for between 1 to 3 weeks.

The thing that absoultely has helped me the most is finding a kinesiologist who understands the importance of correct form and not overdoing it. Literally it has taken years to recruit the right muscle groups to stabilize myself appropriately. For me, what I learned is that my totally lax joints and the HMS have had a number of very intertwined outcomes and resulting consequences.

1. the lack of joint stability has contributed to overwork by certain muscle groups (prematurely).
2. The development and dominance of certain muscle groups (lower back, hip flexors, pecks) for stability has unfortunately arrested and disrupted the neuromuscular development of other groups, including quads, glutes, lower traps, core.
3. My muscles get tired easier, and take longer to recover, than most of the people i know without HMS. What that has also meant is that my muscles are weaker and have less endurance than I (and my PE teachers) had expected them to have. Early fatigue contributes to compensatory muslces (back, neck) to do extra work when it's really not there intended purpose.
4. Over time, the dominant muscles get fatigued, chronically tense, knotted, and cause stiffness and pain.

The key with working with my trainer has been:

1. attention and development of the under-developed muscle groups.
2. reduced attention to the already overworked dominant muscle groups.

That is, instead of stretching the hamstrings and hip flexors, we'll spend most of the time isolating the core (with leg lifts), glutes (w side leg raises) and lower traps (with rows), with lot of tactile queing to make sure the right groups get turned. There is nothing that helps my stiffness more than working out the antagonist muscle groups.

I also get trigger point massages frequently, watch my stress level, and am in psychotherapy which all telp a ton.

best,

SSF

[GreenLantern]

Yes I have trouble sitting or standing for long periods, I can be quite fidgety when sitting down.

[nataliejane81]

I can't sit for long either & never have done, in fact my mum used to call me "miss wriggle bottom" because of it. Sitting with my legs curled up leaning on cushions is so comfy for my hips & back but so painful for my knees... I just have to change position constantly & fidget. HATE the cinema or car joirneys over 30 mons or so thought a they are SO incomfortable & really painful after the 45 minute mark... Slightly better if I drive as I'm engaging my muscles more, I imagine, but then my knees hurt after a while too.

Frustrating not being able to sit & relax ever isn't it!

[isotope]

I have this same problem, but if it makes anyone feel better I am better than I used to be. Not great - just better

These days I can sit through an entire film and only start to feel that screaming agony towards the end, rather than 20 minutes in.

In the past, I've left exams early as I couldn't concentrate anyway with the pain.

On aeroplanes - where there is never any way to put my legs up onto the seat to take pressure off lower back and hips - I've been known to sit down on the floor with my legs folded around my ears, totally squashed in, as the best option! But as I say, it's not so bad now I can handle shorter flights, and I resort to dosing on syndol prior to longer ones, much as I hate that stuff.

[Rosie]

Hi all

i am another one who is finding sitting less excrutiating than it it used to be. Nothing has really changed with my SI joints and lower back, it is simply that I have learnt what to do to keep myself more comfortable. I now have a memory foam cushion for my wheelchair, I use my wheelchair when I know i will be sitting for more than a few minutes, even if I don't really need it for the walking distance, I avoid sitting on hard chairts, like wooden dining room chairs, or seats that are too narrow, like church pews. I also adjust my sitting position as often as possible and make full use of arm rests.

Rosie

[cracker]

i have problems sitting & standing for a long time when i fidget i get called wrigglebum or i get asked if i got ants in my pants.

[carolyn]

I wriggle and get uncomfortable after sitting for long periods. Trying to sit through a film, I can't keep still!
I dread getting planes!!! Keep having to get up and down and move about. On a recent flight I asked the guy next to me who was sat on the isle seat if I could swap and he replied 'Why can't you just sit still then you wouldn't have to change seats' he never moved, then moaned every time I asked to get past him.

[nataliejane81]

Some people are so lacking in understanding (or manners) aren't they.. I hope it really, really annoyed him

[barkingmad]

I had major problems with this when away at the conference last week! my coccyx dislikes me sitting directly on it and the pain is awful. It didnt help that it dislocated as soon as we got in the car to go to Bristol airport. By the time I got back home after a week away it was very bad and I actually had to lie down for several hours...which is bad for me.
I have always been a fidgeter anyway and was well known for being unable to sit for long periods during ward rounds..but the pain in my coccyx is not nice. My pain dr did wonder about taking my coccyx off but we are apparently likely to suffer from phantom pain so if I am going to continue having the pain I might as well keep the bit causing it! i can laugh now but I wasnt laughing about it during the week!!!
Anyone having to sit for long periods in their jobs has my complete sympathy...who would have thought sitting down could cause so much discomfort!