Thursday, 27 December 2012

Knee behaving badly!

Dear Diary,
Apart from going sale shopping this afternoon, I have been trying to rest my bad knee. From the moment I stepped out of bed, I felt my pain in my knee. I weren't sure if I stood on it right til I started walking then I realised it felt dislodged. It was more uncomfortable than normal. 
Then just after I got back home from town, I was lightly leaning on the table whilst standing just looking at my bargains and suddenly my knee started to pop out so had to quickly sit down before it fully popped out. Even after all the dislocations I've had over the years, it still frightens me and probably one of the worst pain your body can feel. It's not just the dislocation itself that frightens me but the thought of collapsing on the floor causing further injury. Tonight was in the kitchen when it went to pop out so you can imagine my anxiety of landing on a hard tiled flooring. 
Tomorrow night, I have my family Christmas party so I want to feel as best as I possibly can. So tonight, I have been on the sofa resting. I'm trying not to think about my knee by deciding what outfit I am going to wear for the party, still not made my mind up yet. 
Anyway, I'm going to have to say bye now as I'm starting to ache typing this. Write to you soon. Keep smiling. Xxxx

Wednesday, 26 December 2012

Merry Christmas!

Dear Diary,
I would just like to say a very big MERRY CHRISTMAS to all of you, my fellow diary readers!! I hope you have had a great day, not over doing it especially if you are a EDS peep. Did you get what you hoped for, what was your dinner like? 
I really enjoyed the day, even managed to help with the Xmas dinner, my first time ever, it was cosy just me and my parents (not forgetting Pixie, my cat). 
My hands weren't too achy after unwrapping presents as they were loosely wrapped making it easier for me to open. Although I'm some of my wrapping wasn't easy for the receivers, ha ha! Luckily, I had my parents and friend helping me. 
The whole process of prepping for Xmas, I did it in moderation. The shopping, the wrapping and the sorting out. This way made it more fun and enjoyable so I didn't have to worry. The only thing I lacked was writing my cards. They are being used for next year to write in. 
My main present from my parents was a Kobo, although I asked for a e-book reader, I stated that I understood if they couldn't get me one so not to worry. My face lit up when I opened it and saw what it was! Whilst most people buy new things because it's the latest gadget, or trend etc, I wanted one as it makes reading easier for me, for example, I can hold it with one hand and I won't lose a page whereas I would in a physical book. A fellow Twitter peep said to me that you can get stands for them so I will be looking into buying one sometime soon. Although I got a Kobo, I also got four books; Cheryl, Tulisa, McFly and Paul O'Grady. I will read these first. These are all big heavy books so will keep me busy as I will have to take very regular breaks to rest from holding them. 
My sister and brother-in-law came in the evening, they stayed for quite a while which was lovely. We watched The Royle Family which was funny. 
Everyone who received presents off me loved them. Like for three special peeps, I baked some shortbread men and placed them in jars with ribbons tied in bows on them. This was one secret, I couldn't wait to find out their reactions! 
Of course, everyone who knows me, knows I like to have my naps to keep me going, I managed to have one before the sister came, I didn't realise how much all the excitement and cooking had tired me out, although I did have a Sherry and a little glass of Bucks Fizz so they probably helped with the sleep, ha ha! 
Anyway, will write soon, enjoy the rest of the festive period and take it easy. Be merry! Xxx

Friday, 21 December 2012

My mattress aviator

Dear Diary,
I just wanted to post a photo of my new bed aviator as some of you have asked what is it. It lifts the mattress up and down by the switch of a button or two. It just lifts the pillow end. Last night was the first night and I think I will need to give it a few sleeps before I say what I think of it.
Well that's it for now, keep smiling. Xxxx

Thursday, 20 December 2012

Occupational Therapy appointment

Dear Diary, 
Well just had another trip to the hospital :) it was all good though. I went to see Sally, my Occupational Therapist. 
She asked me how I was finding my new finger splints which are good but sometimes they're not secure enough so I have to take them with me on my next visit in January. 
Also, she has given me a second set of curved cutlery with foam handles. Now I have a spade which is a fork and spoon combined that will be great for when I have pasta or rice dishes. 
We had a look through her chunky catalogue at plate guards as I'm not able to grip my plate properly with my bad hand so I'm forever chasing bits of food around the plate ha ha! 
This afternoon I'm awaiting for the arrival of my new mattress aviator. So hopefully that will help me lots. I just hope that I don't have to press too hard to operate it. I will keep you updated with how I get on with it. 
I'm off now to try and warm up and rest my knee. See you soon and keep smiling... Xxx

Tuesday, 18 December 2012

A reason to smile.

Dear Diary,
Well nothing much to say that's different about my body with all it's aches and pain, still trying to get on top of my bowel troubles and keeping my tiredness at bay which isn't easy, especially in this cold weather. 
Although when I woke up at 4:30 this morning needing the loo and I struggled to get back to sleep as I was having pain in my leg (the one with my bad knee) from my hip down to my foot. I soon realised what I had been doing to cause this and it was from last night when I was sitting on the floor trying to wrap my Xmas presents (luckily I had my friend to give me a hand or two). I have now leant not to sit on the floor too much and for long periods at a time. One of the ways I find comfortable when sitting on the floor is by having my ankles bending right back by my hips (my old physiotherapist often told me not to sit like this as it can cause my hips to dislocate etc). 
Over the last few days, I have spent some quality time with my close family and closest friends and not forgetting my support worker :-) this has brightened up my spirits and helped me get into the spirit of Xmas. I can't wait to see the rest of my family over the coming week :-)
I am going back to my Occupational Therapist at the hospital on Thursday so I will let you know how I get on. I hope all my loved ones are taking care and to my fellow Bendies. 
Keep smiling peeps xxx

Monday, 10 December 2012


Dear Diary,
It has been a little while since I last wrote to you so here I am with a little update for you. I hope you are ok...
I had an appointment with a Occupational Therapist at the hospital a few weeks ago, I nearly ended up not going as I have been having trouble with my bowels recently. 
Dr Wood (the Consultant Rheumatologist) referred me to the O.T for finger splints. At first the O.T thought she was going to struggle to find me anything that will be fit and still be beneficial but she made some out of some material that you put in extremely hot water and shape to fingers. They have Velcro to strap them onto my fingers. They are for use for doing things such as doing my nails and things where I need sturdy joints to do something like typing on laptop/computer. I only have them for my good (ish) hand with my band hand out of use. 
She will still look for some ring splints in a tiny size but at least I can try these ones and see how I find them. She is also having a look at special cutlery so I have a spare set like the ones I already have. I thought she was very nice and I found out that she hasn't dealt with anyone with E.D.S until me, told me that she was researching the condition before I came so she had an idea of what to expect etc. 
I had a little look on a local motability stall at wheelie frames and there is one that might be good for me, plus it's the smallest one they have, ha ha! I think it is around £50 odd for one. 
Today I received a copy letter from my doctors surgery saying that I have significant vitamin D deficiency which is probably partly related to my mobility problem (as it is quoted in the letter) so looks like I will be put on Vitamin D supplements. Like my dad said, this is the first of many of letters that I will get, telling me results from my blood tests I had done a few months back as Dr Wood wanted to check everything. 
Earlier I mentioned about my bowel troubles, from time to time I suffer from abdominal cramps, pains and severe constipation. I don't know if this problem is common amongst E.D.S. peeps. With support and encouragement, I have been changing my diet which has been really good. 
This cold wintery weather doesn't agree with my joints and muscles. It makes them ache more and I feel shattered quite often. 
Well that's it for this time, take care and speak to you soon Diary. Xx 

Ps I will post a picture of my finger splints when I next w