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

Update.

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

Sharing my eds YouTube videos

Dear Diary,
I'm not sure if I have shared any of my videos with you of me talking about. E.D.S. I filmed them over a year ago so I'm a year older with a few more complications.
I hope you find them interesting and enjoy watching them. You may notice that the quality improved as I felt more confident and comfortable being in front of the camera.
Let me know what you think.
http://m.youtube.com/watch?v=fn-_cAQ4lGs

http://m.youtube.com/watch?v=e3VSaePXuBQ

http://m.youtube.com/watch?v=XEFtG_mxeaQ

http://m.youtube.com/watch?v=m4ZgaVgOZVE

http://m.youtube.com/watch?v=h7CJ4pIksw4

http://m.youtube.com/watch?v=nDqFnT_rAu8

http://m.youtube.com/watch?v=UNHtsvS1Bpk

Here are all the videos that I've made so far...
Bye Diary xx

Me at Hydro.

Dear Diary,
I have managed to be filmed while I had my Hydrotherapy session. Some of you have previously asked what us Hydro and what do I do in it so here is a 45 sec film showing you.
I hope you like the music accompanying it too. I wanted to show that while it is hard work, it can be fun too.

This weather has increased the pain levels in my knee but just tried to take it easy and stayed indoors where it's warm and dry.
I have also given the go-head for the new bath seat/lift so will have to wait for that, I really can't wait as when I was getting in the bath, my knee started to sub-lux but I stopped it, thankfully.
Tiredness has gotten to me a lot this past week and thinks its time for me to go now. Please let me know what you think of my special little video. :-)
Bye for now Diary xx

This week so far...

Dear Diary,
Well it's been quite a few days since I last wrote to you so here I am. This week has been a good but tiring week. I went on a social media skills workshop at the local film and media centre for 3 days. I learnt all about a new social network site and bits n' bobs of other sites. I thoroughly enjoyed the experience and meeting the others on the course. It made me feel good in myself to realised that I do know about something that is so vital for me and my future.
The only thing is that it has left me very tired indeed, I have slept all day today. Last night I felt pain in my lower back from sitting in the same position. My muscles ached all over as time went on last night.
All week since Sunday night, I have had a bunged up head and sore throat so I've been fighting this too but really wanted to be on top form as much as possible.
One thing I like to say how good it is to be around other people and trying your hardest to do things that help you focus on nice hobbies etc.
Well that is enough from me this time, bye Diary xx

Occupational Therapist

Dear Diary,
Yesterday my new Occupational Therapist came to see me and it was a positive visit. I was referred to her by my GP as she is referring me to several people to make sure I am ok and getting everything that I need.
After briefly speaking to other people with similar problems as mine and researching on the Internet, I comprised a list of equipment I think would help me. We went through my list after a brief but friendly chat about things.
I am going to try a few things, like this piece that goes under your mattress and sits you up with the press of a button, I can't remember what she said it called, but I think this will be great. Some days I struggle to sit up as I'm in too much pain to push myself up and have to ring through to the living room to ask my dad to help me up. I think this will also help my knee which at the same time will ease any discomfort I get in my hips so hopefully I will be able to sleep better.
As my current bath stool isn't really much good for me, I'm going to try a new bath lift seat which is meant for corner baths as at the moment, I feel I don't need a wet room just yet, that is something for in the near future. At least they have offered it for me. This seat goes up, down and swivels round so will just need to lift the feet up. It is a bit like my old one I had at my old house/flat, I think.
She is getting me a stand alone handle bar thing for me to grab onto when toileting if I'm in a lot of pain.
She is sending me a catalog to look at what crockery and cutlery I need, at least I can now get a second pair like the cutlery set I have now which I've not been able to get til now. I think she said a plate guard would be good so I'm not chasing my food and trying to hold a plate etc with just one hand, ha ha!
Oh she's getting in contact with my rheumatologist to find out more about hand/finger splints Andrew see what she suggests.
I'm glad to know that she is able to get me whatever I need and that I have a say in which I prefer too. The lady is very nice and seems to know what she is doing and talking about. So yes it was a very positive visit from her.
My pain hasn't been too bad these past few days although I've had a struggle to sleep every night since my last diary post and it has taken it toll on me today. The weather has made my leg worse with throbbing on top of the usual pain but at least the swelling has gone down now. My funny thing on my foot has pretty much got better too.
That's it for today Diary, bye xx

Just what is Ehlers-Danlos Syndrome??

Dear Diary,

I have just realised that I haven't yet explained what E.D.S. is so now is the time for me to do so. The information I’m about to tell you is generalised, as I luckily don’t have all of the following symptoms however I do have the majority of them though. You will see how greedy my body is!

 

Ehlers-Danlos Syndrome (E.D.S) is a varied group of heritable conditions of connective tissue, characterised by skin extensibility, joint hypermobility and tissue (nerves and muscle) fragility. There are various types of E.D.S which are classified according to symptoms and signs.

 

The syndrome is caused by a defect in a protein called collagen (you may have heard collagen being used in plastic surgery eg, for making the skin look younger etc). It is the main part of the body providing strength and support, such as ligaments, tendons and cartilage. When the collagen is defective, it can induce problems throughout the body.

 

E.D.S can affect both males and females. It is however, quite rare. To diagnose the syndrome, a skin biopsy (a removal of a sample of tissue) and this should confirm the diagnosis and also determine the type.

 

Life expectancy with an E.D.S sufferer can vary on the type they have. One type, the Vascular Type can be shorter due to the rupture (burst/tear) of large blood and the major organs. Pregnancy can be life-threatening in the Classical Type and the Vascular Type.

 

Symptoms can also vary depending on the type. The skin can be easily torn and it is very stretchy. Folds of the skin at the inner of the eyes which make the nose look broader. The sufferer may have little lumps which develop over pressure points such as the elbows and knees. Varicose veins is common amongst many types of E.D.S. than in the general population.

 

 

 

 

The joints are hypermobile (double-jointed) due to the ligaments being extra elastic (stretchy). This makes them more prone to subluxation (partly) and dislocation of which is a regular occurrence for the sufferer, this can happen without any trauma (unlike someone without E.D.S). There is a lot of pain and discomfort for the sufferer too.

 

 

 

 

Bruising is easily caused and doesn’t necessarily need much trauma. It tends to take longer to heal.

 

Less common features such as arterial, uterine and intestinal ruptures may occur due to the frailty of tissues. Inguinal (in the groin area) and hiatus (an opening in an organ for example the diaphragm) are fairly common. Curvature of the spine (Scoliosis) may be present at birth or later on in life. Even gum disease can be a symptom. Gastrointestinal diverticula (the stomach and intestines) where a pouch or sac in the lining of the membrane of a hollow organ such as the intestines etc, that is produced in the bowel when the bowel muscle ruptures the bowel wall.

 

The treatment depends on the presenting symptoms. If simple precautionary measures are made, it will greatly lessen the chance of any trauma, scarring and bruising. Surgery and skin suture (a piece of material used to close a wound or to connect tissues) should be taken with immense care as fragile tissues may tear. Sutures ought to be left in longer than normal. The sufferer may be advised to wear supportive aids such as braces to support unstable joints. In some cases, orthopaedic surgery may be necessary but is unfortunately not always successful. Physiotherapy and occupational therapy may help.

 

There are also psychological problems that may occur with a E.D.S sufferer.

What I have just told you, is the simplest way of explaining the condition as it is so complicated. I am sure that you will have by now assumed some of the symptoms that I have by reading my previous diary posts. I'm going to list you my current conditions: Scoliosis (double curvature of the spine) - Osteoporosis - Perniosis - Arthritis - Arthralgia. (These are in the order of being diagnosed with each one.) 

I know other E.D.S.ers have other related conditions such as Fibromyalgia but touch wood, I haven't been diagnosed with this (yet ha ha!) 

I hope I have answered your question of what E.D.S. is and if you have any questions, please don't hestitate to contact me. Maybe you would like to me explain my other conditions sometime? If so, then let me know but for now, I think I have bombarded you enough. :-) 

Today has not been too bad for pain which I can smile about. I just hope that I manage to sleep better tonight as I have been feeling pretty tired out this weekend.  

Goodnight Diary xx