Thursday, 13 June 2013

Update from my Facebook page

#EDS sorry about the lack of updates from me this week, either been too busy or too tired to do so. I hope you are all ok.
I'm still having a bit of bother with my bladder thingy etc but still taking pain relief. I have an appointment to see my GP next week so hopefully that will sort me out properly. 
Tomorrow night I'm planning on going on a tester walk for my sponsored walk in July. I'll be working out the route so will keep you updated. 
I'm also having business cards and fliers made ready for when I start doing my craft stalls etc.  
That's all for now xxx

Thursday, 14 March 2013

My hospital stay. The love for my family and nearest.

Dear Diary,
It has been a while since I last wrote an entry which I apologise for. Unfortunately I was took into hospital unexpectedly with severe abdominal pain and was kept in from the Sunday to the Thursday. On the Friday before I was admitted, I felt very uncomfortable with pain and exhausted from lack of sleep. I thought it was just pulled muscles as the pain moved around my abdomin area. I remember being in town with my parents and getting rather upset at the pain and feeling quite warm. 
Anyway the next day, I didn't feel as bad as I did the day before so thought whatever it was was maybe mending. It wasn't til the night time once I got into bed and I started feeling unwell again. All of sudden, I remember screaming out in pain and whichever way I laid or sat, it was unbearable discomfort. I shouted out to my parents who came to see what was wrong, they gave me some pain relief which didn't seem to touch it. I spent the rest of that night crying in agony. I just wanted it to stop, I had enough, enough of everything. My poor parents didn't know what to do or say for the best. 
Still feeling really bad in pain and exhausted from the night, there was no signs of me feeling better. Again I had some more pain relief and laid on the sofa, my parents phoned the local out of hours doctor call. We found out that I should have gone to the hospital the night just gone as they were worried. I had to wait til they told me the time to go to see the on call doctor at the hospital which seemed forever, luckily there was a cancellation. The lady doctor examined me and was concerned so she sent me through to casualty. There, I had an X-ray and a thorough examination. Before I knew it, a young doctor was putting a cannula which turned out to be a major problem and the nurse was admitting me telling me I was being kept in. Panic had started to settle in. What was wrong with me? Was it kidney stones, constipation (I knew this wasn't what it was, I could tell) or something more serious? 
Finally, they take me up to the ward. My temperature was high, my abdomin/side was swollen and had just started with diarrhoea. The doctors was as confused as I was. I got weighed and found out how much I have lost, was shocked but at the same time, wasnt surprised. Later that night, they put me on a drip and after about 8 hours of no drinks, still wasn't passing urine, they decided I was quite dehydrated. With worry, they then had a catheter inserted which was horrible and uncomfortable. I was also given antibiotics on the drip too. I had no sleep this night. 
When it was the next morning, it was hard seeing the other patients (luckily with my anxiety problems, I was in a bay of six beds) having breakfast and drinks. I was still nil by mouth. I had some bloods taken. The diarrhoea was still really bad, very bad. Never had this bad before. The antibiotics had started to kick in slowly. I still wasn't passing enough urine and my temp was still a little high. Later this day, they let me have some cordial, ahh was lovely! During the night, I suddenly vomited but just a bit. Another doctor came to see me and checked me over, he wasn't too worried although he was unsure of why I was sick especially when I didn't feel sickly afterwards. I still didn't get any sleep. It is very hard for me to sleep comfortably anyway, so with having a cannula, suffering from bad diarrhoea (where they had to keep changing me every ten mins), having a catheter and getting my obs checked every so often, it was impossible. 
On the Wednesday, again I had my bloods taken, the nurse this time I had a bit of trouble with. I saw her eyeing up my bad hand so I politely said that they struggle to get blood out of it but still she went ahead. She tried twice on my bad arm, put the band thing on too tight which caused my hand to swell up. I told a nurse about it but they couldn't do much so I tried to raise it up. My main surgeon who visited me every morning had finally let me try and have some food starting with soup first. They wanted to see if I could keep it down. I did :-) they also took out the catheter and reduced the fluids too. The diarrhoea had stopped too eventually. When a nurse was attaching a new bout of antibiotics, it really hurt badly when he flushed the liquid into my arm. Later on, it started to leak and a nurse took the cannula out. My arm was swelled up and couldn't stop bleeding. The doctor that got called to check me over, she inserted a new one and was very surprised to see they had put in the biggest one in me so she made sure she put the smallest one in. That night, after I waited and waited for a nurse to change my bed from the leak at 5pm, one eventually changed it at 1am after my sister had asked them (at 8pm) and I asked every time they came to me. I also had a very long phone call to my parents in tears as my right arm was causing me too much pain. I had so many blood tests done and with the big cannula, my arm or me couldn't take anymore needles! A nurse saw me crying and said she'll come back to see me once I finished talking on the phone. I waited an hour (2am by now) for her to come back, but she didn't. I was too exhausted and just tried to rest. 
The next morning which was the Thursday, that same nurse appeared and said sorry but she got called to another patient etc. I told her what the matter was but don't think she did anything.i later talked to another nurse who had been on shift earlier in the week and she actually tried to sort it out for me. She was really nice as most of the nurses were. Ward 4 is a good ward, they looked after me despite being rushed off their feet with being short staffed. Again, another blood test done. The nurse this time was understanding and listened. The surgeon again made his visit and despite feeling confused at what has been wrong with me, seemed happy with everything. He said I could go home. I fought back the tears, partly because I was happy to go home and partly because I was extremely exhausted. I hadn't slept for 5 nights. 
Now a month later, I am lot better, yes I'm still taking it easy, doing one thing at a time and taking each day as it comes. I'm still trying to fight my tiredness and feeling weakness but I know this is to be expected, those days I spent in hospital really took it out of me. From being let out of hospital, I had a few weeks to gain some strength and focus on my girly trip to Manchester with my sister. She took me to see Girls Aloud and shopping. Being with her meant that I had a brilliant time and have a bit of much needed fun time. I'd be truly lost without her. She's a great role model. I a
m on a journey of trying to put weight on and looking after my health. This is a new start for me focusing on my health and hopefully start back organising my fundraising (when 
I'm ready). I'm awaiting for my new bath lift (still) and walking frame. In the meantime, I am thankful to my parents for always being there and looking after me. I love my nearest and dearest. 
Anyway, I'm going to go as my shoulder is needing some rest. Thank you for following me a d my diaries. Keep smiling <3 

Thursday, 7 February 2013

New update!

Dear Diary,
Over the past few days, I have been working on spreading awareness of EDS. First, I have just been sharing links to my friends and family. Hopefully I can reach a further audience to spread the word even more. 
So now, I have this diary blog, my Facebook group and now my new Facebook page. With having a page, it means that my posts can be posted straight to peeps Facebook feed walls meaning it is more open. I also use Twitter still which I love. 
The page will keep all of my fundraising projects progress as it happens. If you have EDS, or any thing similar or know someone who will be interested, tell them to click 'like' and also share. The more people know about EDS, the better. 
To those of you have done your part so far, then a huge thank you from me! 
I have been rather tired today, in fact I have slept a lot so haven't managed to do much at all. My knee has been particularly sore again so have had to rest it. I have to go to the hospital twice the week after for Hydro and a follow up appointment with Sally about my finger splints. Woo that means I get to have dinner at the hospital restaurant on the Friday before Hydro :D I love it! 
You may also have noticed that I have been posting more in my group, as I am wanting to feel closer to my followers and treat it like a proper diary for any random thoughts or questions etc. I hope you don't mind and can keep up with all of my different places, just like technology, we have to somehow try to keep up, ha ha! Don't worry, I won't go too fast ahead. You all know that I prefer to do things at my own pace and I'm sure you do too.
Keep smiling! xxx

Ps. There's me on here, 
there's me on 'Little Miss DinkyKt's Video Diary - Ehlers-Danlos Syndrome' on Facebook,
 on Twitter I'm @DinkyKt 
and now on 'Dinkykt's EDS Diaries' on Facebook. 

Tuesday, 5 February 2013

Listen to your body.

Dear Diary,
Sorry I haven't wrote to you for a few days. I have just been taking a bit of time out to myself at home with my family. Last week, I felt unwell and was in some pain. You would like to know that I feel a lot better this week. It's just nature ha ha! 
Today I have mostly slept, I've realised that I can go out and do something for a day or two then it tires me out completely. This cold weather doesn't help either. It is funny how you notice a pattern but it's good because you see how your body copes and works. It is important to listen to your body. 
Over the last few days, I have noticed that I've been getting more pain in my right shoulder again. It seems to flare up every now and then. It compensates for me not being able to use my left had as well as it being my good arm. I use it to bounce myself up when I fall into the wall. The weather and over-use aggravates the arthritis so I have to remember to go easy with it. 
This week, I have been looking at venues for my fundraising event and hopefully tomorrow, I will make my decision. 
Anyway, I'm off now so keep smiling and take care. xxx

Friday, 25 January 2013

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

Thursday, 24 January 2013

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

Monday, 21 January 2013

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