Help ME
Today I thought I would introduce to people who are unaware of the help I need just to get through a day, hopefully this will also help other sufferers by introducing you to the items that are available to make things easier for us .
Occupational Health
This maybe different where you live but my occupational therapists have been great . They came out and spoke with my husband and I and they asked about all the things where I was really struggling . Now again this maybe different for you, my ME is severe so I am bedbound for the majority of the time . I need help dressing , showering , I can’t cook for myself . Which means that a lot of the things that an occupational therapist could suggest like for instance a kettle stand is not relevant to me . I needed support getting out of bed , I needed help standing from the toilet and I can’t stand in the shower .
Links below are similar to what I have :
Toilet surround
http://www.discount-mobility.co.uk/p532772/adjustable-toilet-frame.html?gclid=CI_4xa6d_8QCFSkcwwodmJ0AAA
Shower stool
http://www.completecareshop.co.uk/bathing-aids/etac-shower-stools/etac-edge-shower-stool-view-large?gclid=CLCE0uad_8QCFZTLtAodVRMAGw
We have 3 floors in our home and the top floor is out of bounds for me , it’s just too much for me . The only stairs I occasionally attack are the stairs to downstairs and occupational health had an additional bannister fitted so that I can stand on the stairs as opposed to my normal method of bottom shuffling . Now I can walk with both hands supporting the weight of my body . They also fitted a curved rail to the bottom of the stairs so I have continual support . They also measured me up for a wheelchair and a walking stick . Now again due to the severity of my symptoms they would not allow me to have anything other than a transport only chair which means I have no option to self propell . I was referred to the occupational health team from my clinic . Here in Liverpool we have an infectious diseases team which is where I was diagnosed . If you have a Dr who supports you or a team you can be referred to then please ask for the help . I don’t know what I would do without them and to be honest ,the amount of work and the supply of the goods amounts to a fair bit . Definitely a service I would recommend .
Bed
I already sleep on a orthopaedic mattress the only changes we made to our bed was we changed from a low bed to a higher bed frame . We were offered bed risers to increase the height just so it wasn’t such a struggle to get up . Getting up from the bed I have to get my legs off the bed and come to a sitting position . This helps with any dizziness you may have , so from a sitting position I am able to push up using my walking stick and then I have only a few steps until I get to my bathroom . Plus I have support all the way from chest of drawers and bed frame .
My sleeping routine is helped using support pillows .
I have a v shaped pillow which really helps by giving me additional shoulder support and if I am writing or texting I just tuck it over at the top of the v to give me additional height . I got my pillow from Aldi but if you look at the link below , well you get the idea of just how many places sell them .
V shaped pillow https://www.google.co.uk/search?q=v+shaped+pillow&client=safari&hl=en-gb&source=univ&tbm=shop&sa=X&ei=9vgxVdzAA_LU7Aa864DgDg&ved=0CBoQsxg&biw=375&bih=559
Now I also have a long body pillow I bought this as it hurts being in certain positions for a long time . I lie on my side a lot so I find lifting my knee into the pillow really helps . I get a lot of pain in my hips , so I put the pillow behind my thighs and it really helps . It is also great for aching leg muscles , I use my feet to slide it under my calves when I am lay flat or I will put it under my knees . It just gives that little extra relief . Below is a link to the actual body pillow I bought .
Body support pillow
http://www.argos.co.uk/m/static/Product/partNumber/3768789.htm
Other than all the pillows that take over our bed the only other things I could really advise are dark or black out curtains / blinds. I also use a sleep mask if my eyes hurt , also great for use when headaches or migraines happen . I also wear large sun glasses in the summer as my hay fever is bad . I know it sounds crazy lay in bed with sunglasses on inside with the curtains closed but trust me when you pair them with ear plugs it is definitely a look for 2015 !! Sorry bad joke . I do use ear plugs a lot only cheap silicone ones , as sometimes neighbours live in their own little world . One where dogs barking all day or children screaming from 7 till 11 is the norm ! So ear plugs and eye masks are definitely part of my essentials .
I also use apps on my phone , I find sometime a white noise or rain app really helps in relaxing and reducing the anxiety . I bought my over the ear headphones from t k maxx they were about £15 but if you have been up all night in pain and you really need rest then a relaxation app or rain drops can really make a difference . Help you get the mind rest you need .
Glamsticks
Yes I am a snob and I still want nice things so I bought a blinged up walking stick .
The level of service this company offered is amazing . If you consider that every single stick is hand made to order . Companies like this should have the recognition they deserve .
Angel Mobility
Before my wheelchair was ready I had a charity event which involved a sponsored walk . So I done a bit of research and came across a company on eBay . I still have the chair 3 years later and the only thing that has been an issue was I needed to change the front wheel after my over eager husband pushed it a little too hard into a large pavement block . Pavement 1 – wheelchair 0
It was really easy to repair . Can’t fault them on their customer care , they had everything delivered next day . The chair easily folds down to fit into our boot . Our car is a focus .
http://pages.ebay.com/link/?nav=item.view&alt=web&id=321037453146
I really hope this helps and I hope it gives people who don’t know much about ME an idea of just how severe this illness is . It’s no fun being in pain all day every day . There are lots of resources available to help , if you are struggling speak up . Show your Dr what was available to me through occupational health .
Good luck x
Should you want to support me in raising awareness and money for the ME association please take a look at my just giving page . All donations are happily received , I don’t care if you donate 10p or £10 . If you can’t donate then share , share , share it is a much about raising awareness and showing people just exactly what we go through on a daily basis .
Spending the day as a Princess for ME Association because All I can do is sleep 😦
New just giving page coming soon .
Don’t forget , Fight like a princess x x