Unbelievable

[Susie]

I have very poor sleep these days, but that's because I'm so uncomfortable. I get woken by lower back or knee or leg pain. I struggle to move around at all once in bed. I have a hospital bed with a hybrid air mattress. I thought it would be the answer to all my problems relating to comfort but it's really not. My biggest problem apart from not being able to stand or walk is that I'm never comfortable anywhere for long.

Fortunately I don't have any breathing problems yet.

Still got an awful lot to be grateful for, but would be lovely to be comfy.

[Ellie]

I have a hospital bed with a hybrid air mattress. I thought it would be the answer to all my problems relating to comfort but it's really not.

Sue, I can say from personal experience that there's a significant difference between a hybrid and a full alternating air mattress. I had a hybrid mattress last time I was in respite but found it very uncomfortable and it definitely didn't provide enough pressure relief, marking an elbow and both heels, even though it's in the 'very high risk' mattress class. I had my pure alternating air mattress brought in from home!

There is also a wide variance in quality, comfort and functionality in alternating air mattresses and we need one with adjustable firmness, proper air cells and an alternating cycle of not more than 10mins really. I cannot move at all in bed but sleep pain free and comfortably all night. I put a soft pillow under my knees to take drag off my lower back and to put a slight bend in my knees.

If your mattress is not comfortable, ask for a better one. Sleep is sooo important for us, both mentally and physically.

My biggest problem apart from not being able to stand or walk is that I'm never comfortable anywhere for long.

Has your OT assessed your seating, provided cushions, a riser recliner armchair? I know you're getting a powerchair soon, that too needs to be made comfortable specific to your needs with seat cushion, backrest, armrest, leg rest and drive control. xx

[Susie]

Ellie Thanks, do you know what make your mattress is? My OT are now trying to source a new mattress for me which will be more comfortable.
My OT is great and works very hard to keep me as comfortable as possible in all aspects of life. She comes out regularly for an hour or two. I love it, she's great to talk to and very uplifting.

Unfortunately most of my healthcare team have little or no experience of MND. I'm certainly the only one here, so it's a learning curve for all of us. We do get support from the mainland but that's less hands on although my MND nurse coordinator is also really good. Infact I think in general I have a great team around me and am very grateful. Nothing happens quickly though. The joys of living in a small island, but even now I have no regrets.

I do have a rise and recline chair which is very comfy for a while if I recline it, bring my knees up and let them splay out sideways propped up with cushions. I have attached dog collars just above both knees so that I can pull my knees up. They have ordered a Careflex chair for me. Just waiting for them to get a ferry booked, so looking forward to that coming. xx

[EvelynMW]

Not been on the forum for a while - i seem to be a sleep queen! Last 3 nights, 11 hours, 12 hours, 7 hours (last nights was the shortest night sleep i have had for a very long time!) Sorry folks, i would like to sleep less - often not awake for much of the day at all!

[Ellie]

Susie Currently I'm on a Domus 4 alternating air mattress.

I have attached dog collars just above both knees so that I can pull my knees up.

Ingenious Sue 👍👍 I love it 🤩🤩

[Susie]

Ellie thanks Ellie, I'll mention the Domus 4 to my OT.

The dog collars are great, it's the easiest way to get my feet onto and off the footrests of my wheelchair. I can also stop my knees falling sideways unexpectedly, which can be quite painful when they hit something. Only ever take them off to shower.
Would never have dreamt of such a thing a few months ago. How very strange life has become. A constant quest to make life easier. Keeps me out of trouble 😂😂😂 xx

[matthew55]

Nothing is strange when MND is involved. 🤗😁👀😜xx

[Susie]

Very true Matthew x