A rare relaxed day :-)

Dear Diary,

I think today has been alright, taking it easy and not feel so down. I would defo put that down to the continued support I'm receiving for my raising awareness of EDS. It has given me the strength to keep on bring determined to raise as much as I can for this condition and the charity. 

I have even managed to gain support from my local MP, who is happy with what I am doing and thinks my diary is very good idea. 

I just hope that I can make people proud of what I'm doing and continue to advise me along the way, particularly my family, close friends and fellow EDSers. Any other support is also valued immensely too. 

My pain levels haven't been too bad today and I also managed to stay awake more. Spending the majority of this week sleeping has definitely helped me both physically and emotionally. Fingers crossed that through the night won't be too bad either.

Keep smiling everyone and talk to you soon xxx

OT and Fundraising update.

Dear Diary,

This morning I went to see my OT, Sally. She wanted to make amends to the finger splints as I felt they weren't secure enough whenever I wore them. I knew it wouldn't be an easy task with having such skinny fingers but it was challenge which Sally appreciated. Today she had a student with her and as always, I was happy to have her joining us during my appointment as hopefully it may entice her to research EDS. 

Well after looking through her cupboards etc, we decided to try some different strapping so now I have three types to try at home. There's the original thin Velcro strap, thick foam strap that sticks to Velcro and some black thinner but stretchy strapping. The foam and the black ones definitely felt the most comfortable and supportive. 

I said how the little finger still didn't feel quite right as it doesn't straighten very well so Sally made some full finger splints too and for all four fingers. 

I'm going to see how these go and work out which ones work best for what etc. I will be going back for a review to see how I'm doing with them. 

I still cannot believe I have slept from around 12:30pm til about 5:30pm, for once I didn't feel too tired but I was up earlier today with having the appointment. 

A little update on my fundraising event, I'm starting to gain a few volunteers to help out. I am meeting up with a lady I met on a Social Media Workshop who works with the community and has professional experience and share some advice. Things are looking good, I still need to visit a venue for the venue. I will be looking for volunteers who are crafty and would like to run a stall and one for a cake stall. There may one craft stall or there could be a few but I will let you know more soon. 

Keep smiling and be with you soon xxx

Fundraising update and swollen ankle/leg.

Dear Diary,

Today has been a mixture of good and bad for me. After not sleeping very well, and laying across the bed so I could have my knee on the edge dangling my foot down. Then to suddenly getting woken up to loud knocking on the door, I kinda sprung out of bed half asleep, ending up nearly going flying across my room as I went to put my foot down on the floor and got to the door only to find whoever it was had quickly disappeared. Then the light headedness appeared and I was in great pain with my knee and foot. 

When I was getting ready, I checked my foot as I was sure it wasn't right, and it was swollen around the ankle. I struggled to put my boot on it, I know these boots fit perfectly usually but I perservered by continuing to wear it. I would have only struggled with my other footwear and these ones are ankle boots which were furry inside and easiest to put on. 

When I was out with my support worker, she managed to take my mind off it a little as we were discussing about the fundraising topic. There will be a FUNDRAISING EVENT coming soon so keep an eye out for it! We came up with lots of ideas and maintained to realistic with what we decided. I will keep you updated on our progress with it. I'm determined to make it a success. 

Tonight, I just relaxed on the sofa and tried to rest my foot up but struggled cause of my knee. My dad gave my foot a little massage just to try and ease the swelling, it helped a bit. This has made me more ambitious to succeed at the fundraising for the Ehlers Danlos Syndrome charity. 

My shoulder pain is starting to flare up a bit now so I'm going to say farewell for today and hopefully I'll feel more comfortable in bed tonight. Keep smiling and take care in this snowy weather. Xxx

Skeleton Earrings

Dear Diary,

Last weekend when I was in Lancaster, I bought something and just couldn't resist them. They are a pair of Skeleton earrings (in fact I got two pairs, one in metal colour and one in gold colour). The reason why I'm telling you about them is because they remind me a bit of my flexible joints, ha ha! The arms and legs are just floppy when you shake them about just like I do. 

Here they are: what do you think of them? Do you think they're cute? Do you see what I mean about being flexible? 

Dr's Appointment

Dear Diary,
After forcing myself to get up early, today has been pretty long with having hydro as well. Still smiling though!
Well I went to the doctors like I said I was, I think it has eased some of my worries. I actually went inon my  own which is a positive showing that u trust and feel comfortable in talking the GP by myself.
She explained to me about my vitamin d deficiency which is D3 where the calcium is involved. The normal levels for this is 50 and mine is very low at 23. This could explain partly why I feel even more tired than whats expected of an EDS peep and feeling low. So she's put me on Adcal, a big white powdery chewable tablet twice a day. I think I have to have my bloods done again in about 3 months to check things. If my levels raise enough by them, I'm hoping I can have less of the Adcal and be on a high calcium/calorie/fibre diet which is what I'd rather do.
This led us on to check to see if there was any more results from the blood test and there wasn't which is a good sign. She went through the report back from the rheumatologist and found she wants to refer me to have an echocardiogram and to a dietitian with my weight being so low. We were puzzled to why the Rheumy hasn't actually done the referrals herself but least it's been done now.
I talked about my bowel troubles and she has prescribed me some laxative medicine for whenever I need it. I explained that I have been trying to change my diet for the better. She understands why i would have trouble because I'm not as mobile etc.
We even had a little giggle and she was very patient and understanding. At least I know I have a good GP now who listens and genuinely cares. I can now relax until my echocardiogram had dietitian appointments but in the meantime, I will continue with my eating and take my medicines.
I think I've pretty much summed up the appointment. My hydro went well, just made me more tired and hungry (but nothing new ha ha!) keep smiling. Xxx

Silent Tears

Dear Diary,

Happy New Year to you! My focus for 2013 is to look after my health and do things at my own pace. Hopefully I can try and do some assignment work for my writing course which gets put on a back burner with struggling tiredness a lot of the time. 

This past week, I struggled with how I have been feeling which has not been very good, unfortunately. At times I have felt so low. I'm just glad and grateful that I have had my family and very close friends to talk to. A lot of it has been because of being in pain, struggling with sleep, my knee keeps popping but there has been other reasons too. However low I have felt, I still try to smile through it all although admittedly, cried to myself at times. 

I am going to see my GP on Friday morning, to discuss about the vitamin d deficiency, my bowl troubles and me feeling low. I'm planning on asking her if she knows what's going on with my other tests and results that I'm still waiting for. 

I also have hydrotherapy on Friday too which will be good for me. 

Anyway, I'm going to go and do a bit of reading to relax me before I go to bed later. Take care and keep smiling... Xxx