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

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

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

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

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

Yukky but strange.

Dear Diary,

Would you like to see my little surprise that I discovered whilst relaxing in the apartment in Manchester?

If you are squeamish, then please don't look at the picture below:

There is bruising around the bit where you can see the bone under the skin. It looked horrible when I showed it my sister and we couldn't pin point anything in particular to what has caused this exactly.

This week, I need to just keep an eye on it to make sure it doesn't get any worse.

Ahh how it's all fun and games when you have E.D.S.!! Well not really much fun but I like to try and think light-hearted sometimes.

I'll let you know how it ends up, bye for now Diary. xxx

Rest in Peace Dorian.

Dear Diary,

I saw this a few weeks ago briefly but read it thoroughly this week. It is very sad with what happened to Dorian, and it really brings it home.

 

http://www.dailymail.co.uk/health/article-2220593/Dorian-Thomson-Male-models-girlfriend-reveals-killed-chronic-pain.html

 

If only people/medics can understand what it is like living with chronic pain and how bad it really is. It's also very difficult to even try to switch your mind off the pain when you have in many places at once, like I have it in my bad hand, right shoulder, right knee, my ankles even and wherever else feels like its sore. Like I said in my previous post, it does make you feel really low to the point of crying. One thing, I'm glad of though is that I had a heart murmor and was sent to R.M.C.H (Royal Manchester Children's Hospital) under the care of Professor Galasko who diagnosed me at two weeks old with E.D.S. There are so many people who are on a battle to be diagnosed and my heart goes out to them.

This is also one of my reasons why I'm trying to raise awareness about this condition. So please please share about this story and about this facebook page, and my blog littlemissdinkysedsdiary.blogspot.com to help people like me, like Dorian and many other EDSers.  Xxx

Feeling low is a pain.

Dear Diary,

I’m sorry I haven’t wrote to you for a fair few days, today is the first chance I have been able to write. Last week, I felt tired, sore from the blood test, then the flu jab and I have felt too low in myself to write anything.

I think everything just took its toll on me last week with one thing or another. Being in pain, the terrible sleeping pattern and how it was making me feel. It was hard to think positive about things when all you felt was pain. They say ‘don’t think about it’ but you can’t help but think about feeling sore. It overtakes everything else. Things seemed rather overwhelming. I don’t often tell people how I really feel inside, my thoughts are that people have enough things going on in their own lives to hear me talk about my emotions in a deep manner. I also fret to myself that people may think I’m just feeling sorry for myself even though I don’t as there are people worse off than me. E.D.S can cause for its sufferer to have some form of depression (I was diagnosed in early 2008) and I have severe anxiety problems. I think anyone could understand if someone had chronic pain and they had depression, I think some people may not even realise that I too suffer from this as I always smile.

My left arm from the flu jab is a lot better now and the bruising on the right arm, is all green and yellow which I’m glad about.

Next week I have Hydrotherapy again, I’m sure I will gain plenty of benefit from it like I usually do but perhaps more so.

I will write to you again soon Diary, so farewell for now.

Bloods.

Dear Diary,
Well I've had my bloods done and it wasn't the worse blood test that I have had, thankfully. The lady was going to use that magic cream but decided not to as she thought it wouldn't make much difference.
After struggling to get a clear vein in my left arm, she ended up doing it in my good arm. Damnit! She used a tiny needle and managed to get blood out of me. With my dad, and the lady, together they distracted me as much as possible by talking about my upcoming trip to Manchester although I still felt the pain of the needle going into me. She was very gentle with me and took great care not to cause any further bruising than necessary. Afterwards, she held the cotton bud tightly over the needle hole for as long as she could.
Now it is hurting and struggling to move my arm (luckily I am typing this on my iPad and thankfully my fingers are bendy so they can twist to each letter). There a little bit of bruising but not the worse I have had.

I just hope I don't have to wait too long to find out the results but in the meantime, I will just try and think about other things.
See you soon, and keep smiling. Xxx

Still swelling up...

Dear Diary,
If I could just have one day where I didn't swell up or feel pain, I so would. It is hard to explain to people who don't really understand chronic pain. Sometimes I do feel like a broken record saying how I'm in pain a lot but if I didn't then people wouldn't understand how or why I am like I am. Maybe I'm just talking in riddles.
All this week, my leg has been swelling up and it has caused throbbing in it. I've tried to raise it up but it hurts my hip having it in mid air for periods of time. I try to walk around my bungalow as much as I can but again, the pain is awful. The way my knee is causing me to walk is affecting my hip and my foot.
I just can't wait for my new Occupational Therapist to visit me and hopefully I can have something that will help take the pressure and some of the pain off my bad leg so I can manage to walk round my home easier and safer. Hopefully this will also prolong the effects of the Arthritis from happening so soon.
Typing this on my phone is much easier for me as it doesn't strain my shoulder as much. Anyway Diary, I'm off to get my hair washed and then relax before I have to get ready for later. Just keep telling yourself Diary, keep smiling...

Rheumy Time...

Dear Diary,

Yesterday I had an appointment to see a Rheumatologist. It was my first time in seeing a Rheumy, so I was quite nervous and unsure of what to expect.

As soon as she called my name, she quickly introduced herself and shook my hand. In with her was two medical students which I didn’t mind being in the room with. I always think ‘if I let them in the room then there are one or more people who are aware of E.D.S’ which is my aim. J They seem friendly and interested in what I had to say.

After many questions and a good examination of my joints, which included bending them as far back as she could. She wants me to get my liver, kidneys, my heart, my bones and my thyroid checked out. So unfortunately I have to go and have my blood test done which I’m not looking forward to as my arm always ends up a mess afterwards. Though I’ll be having magic cream and I’ll tap regularly on the surface (a trick I learnt from Writington Hospital when they were inserting the Anaesthetic needle into my hand) and keep it warm to help them get blood out of me easier.  

My heart will be checked by an Ultrasound scan, I presume like they did do when I was younger. The Dr wants to see how it is because I had a heart murmur when I was a baby and with my spine being so severely curved.

The reason why she wants me to get my Thyroid checked out is to see if there’s any reason (under/over active) to why I’m so underweight. I’m not majorly underweight though. So she is also referring me back to see a Dietician. They have always told me to eat little and often. Several times they tried me on different weight gaining supplements, like Calshakes, Ensure+ and Calogen but they all filled me so I didn’t feel like eating which I was unhappy with. I just hope that together I and the Dietician can come up with a diet that I will feel happy with and that will help me.

I have Osteoporosis; I was diagnosed while I was still at school so the Rheumy Dr wants to see how they are doing.

 I am also being referred to see a Podiatrist to find out about having some support things to hold up my ankles in shoes. When you see my naked feet, you will see that I have flat feet where the muscle is supposed to support the ankle upright but they don’t. As a youngster, I used to have to wear Paedro boots (which came in all jazzy colours) but they felt hard on my feet.

She is getting in contact with Hydro therapist to see what is happening with the Hydro as it has been out of action all summer but she wants me to go to it permanently. Hydro therapy is a pool of hot water and it helps the muscles and joints. I get a lot of benefit out of it although you only get to have around fifteen minutes in it as it is very hot. You crinkle up like a prune within fifteen minutes!

Fortunately my leg was swollen so she had a look. Again it was squishy and throbbed a little. After a little prodding, she told me it is Peripheral Edema. I’ve noticed it swells up after every time I dangle my leg out of my bed from the knee downwards. This is common in older people, in a way; it is like I have the body of an eighty seven year old (when you pair it up with the Osteoporosis and Arthritis). L

We had a good conversation about Occupational Therapy. Luckily I have my new OT coming to see me next month. During this discussion, we were talking about what hand/finger splints could be good for me. I have been given the task of looking online at EDS support sites/groups to see what other people have that helps them. This was something I was going to ask the Rheumy Dr about so I was quite happy when this came up. Every time someone does my nails, they bend funnily and it hard to hold them as they are so bendy. Not only doing my nails, but holding pens and even typing are a bit of a task for me. For so long I have just put up with it but now it does hurt a little. Apparently there all different kinds of hand/finger splints out there and the Rheumy Dr seem optimistic in getting me what I need even if it isn’t in this country.

I have also discovered that I have yet another condition called Arthralgia. This is basically joint pain which I think is in my knee especially. My list just seems to get bigger and bigger!

One thing also that she is doing for me is trying to get hold of my medical records from all the hospitals especially Royal Manchester Children’s Hospital. As she said, she isn’t sure where all the old records will be kept now they R.M.C.H have moved from the Pendlebury site but she will do what she can. I would love it if she managed to get hold of the videos they made of me when I was a youngster that was filmed for training and research purposes. I’m curious to see what they did to me and said about me. I have a lot of memories at the R.M.C.H and Prof. Galasko who I saw from when I was just two weeks old to when I was seventeen. J

So as you can see Diary, I have had a lot to take in and think about. I’m very grateful that I have finally found a GP and a specialist Dr who have took a keen interest in me and my E.D.S after all this time since Prof. Galasko. It has made me wonder why no one else has bothered to check everything out especially about my weight concerning the Thyroid issue. I am glad to have met this Rheumy Dr and will be seeing her again in a few months after all these tests have been done.  

The pain in my shoulder is worsening now so now I will love you and leave you to be...

Patience...

Dear diary,

After having a lovely sleep over at of my sisters last night, I am feeling very tired tonight.  I had a time.  As my shoulder is hurting me I am trying out my voice recognition software on my laptop to type in my diary entry.

I didn’t sleep very well last night because I was in pain and discomfort.  Anyone with EDS will understand how much we need to live with this condition, so luckily I have the patience to persevere with using this voice recognition!

I am glad that the swelling in my leg has gone down as it was quite swollen yesterday.  The swelling was fluidly and squishy. It was the usual swollen feeling of being heavy and achy. I’m unsure exactly why it has swollen but it keeps doing it, either on the leg or around the foot area. Every day I feel like I am constantly checking to make sure nothing has gotten worse but you have to remember not to let it rule your life although it is hard to strike the balance.

Due to lack of sleep, I will try and make sure I get a good night’s sleep tonight. My body is telling me to go now as it doesn’t have any energy left and the pain levels aren’t too good now. So I will keep you updated in my next diary entry, keep smiling J

You're Pulled...

Dear Diary,

The time is 1:25am and I feel the most awake I have felt all day. This is just typical. It is well known that I get called a night owl by many people who know me. It can make me feel a little lonely sometimes because as everyone else is fast asleep, and I’m wide awake.

Now is the time I feel mentally best able to concentrate on doing my assignment work as I want to do some now but the pain in my shoulder is really hurting. I can feel all the tendons pulling yet I’m hardly moving it. So frustrating that I can’t use my left hand anymore or otherwise this would have took the load off this bad shoulder.

Today hasn’t been too bad for me pain wise which is nice. It definitely helps by having lots of rest and not over doing it.

I’m going to have to say bye as this pain is getting worse. Before I go though... please place yourself sitting down still and in the tendons in your shoulder are constantly pulling and against each other without even moving your arm. Not only this but that someone is lifting your shoulder round and round in its socket, over and over. This is an example of how much pain I am in so that you can understand a little more.  Goodnight diary.  

Smiling Gnashers...

Dear Diary,

Today I went to the dentist and it went okay. As usual, I took my two pillows so that I can lie on the chair comfortably. Everything becomes like a military operation where I am concerned, ha ha! Just like any other time I take a visit to the dentist, I always hope for the best.

My dentist has gotten used to me and my needs. Like I always raise my hand or do the thumbs up whenever she asks me questions or if I need a moment break. Luckily she knows about the EDS and knows to be a bit careful with me. She has done wonders for my teeth, as when I first saw her; I still had stitches in from when I had 7 baby teeth out in Lancaster Hospital (who never unfortunately bothered to have a follow-up after the surgery) around two years previously. My gums were red and bled a lot, they weren’t healed properly. I had loads of gaps from where the teeth were taken out and I grew to hate my much-loved smile. Yes, she has done a lot of work, and the majority of it is due to the EDS. When she applies the gum cream, she always makes sure she keeps it there longer to just make sure I don’t feel the injection. We have learnt a lot along the way although she’s a very good dentist.

Anyway, after several hours later of having rest with my blanket and sleeping, I’m feeling a lot better. There are still a few places where it is still numb but I am happy looking at my smile. J

My shoulder is niggling at me like it usually does and I have to keep it still just to relieve the pain although I do move it as often as possible so it does not go stiff. The windy and wet weather isn’t doing my knee any good; I am finding it difficult to get comfy. It kind of feels dead in an achy way. I get slight shooting pains up my legs but think that this is probably due to the bad weather.

My foot is a little puffy and swollen too. This is something I like to keep an eye on in case it goes a funny colour like it sometimes does. The funny colour is because I have a circulation condition called Perniosis, where the blood spasms under the skins surface. There isn’t a lot that doctors can do for this. So it is left for me to raise it up when it gets too bad or not letting it get cold. I have had this for a few years now; it took me about six doctors to find out what it was. First I went to casualty in Lancaster, then to a GP in Lancaster, then they referred me to Podiatrist also in Lancaster (I was based in Lancaster at the time so this was around eight to nine years ago) who didn’t really have a clue. By the time I came to live back in Barrow, I was still having problems with it so I went to my GP, who referred me to the local Orthopaedic surgeon at FGH who then referred me to see a Vascular surgeon (I felt really anxious by this point and tired at seeing so many medics) and after a quick examination, I finally got a diagnosis! This becomes the norm for when you have EDS, being referred to one medic to another and then again.

Apart from all the aches and the visit to the dentist, today has been nice. I am grateful to have a loving family who look after me and it has been nice to have been in contact with my friends. J

I am going to have to go now as my shoulder is causing me some pain and it is feeling really tight, like it is pulling roughly against my body. Until next time diary...

Diary Entry 1

Dear Diary,

Well this is my first entry and I’m not quite sure what to say so I will tell you how my day has been. Today I haven’t done much to feeling too tired. I struggled to get to sleep as I felt too achy to get comfortable in bed which ended in me lying sideways across my bed with my knees at the edge dangling. Once I was asleep, I slept fairly okay though.

When I woke up today, I felt tired and sleepy so I curled up on the sofa in my onesie with my blanket over me. I fell asleep until it was time to eat. Thankfully I wasn’t feeling too sore this afternoon, but I think the rest helped.

Tonight my knee has been sore, it felt like joint pain rather than muscular. I just wish there was more that could be done for it. I’m too young and would be an unsuitable candidate for a knee replacement as I have Osteoporosis; it might not be dense enough for it to be done. I don’t have much muscle tone so it would be too weak. At the moment, I’m just having liquid pain relief and a strong anaesthetic gel to put on it. I was offered an injection but I was too scared to have one done.

My shoulder blade hasn’t been too bad today but a bit tender tonight, I have Osteoarthritis in it. When I move it too much, it can be awful pain. I started having problems early last year before my sisters’ wedding, and eventually went to see a doctor about it. He said it was just a strain in the muscle but it never got better. I went back to the doctor (after my Hydro-therapist told me to go back) early this year, this time was better. This doctor properly examined me and asked me questions then told me it was Arthritis. I knew it was more than just a strain! It was so frustrating. I have to keep having rests as I write this to give my shoulder and fingers a break.

Anyway, think it is time for me to rest my shoulder now. I hope I get to sleep ok tonight and not feel as tired tomorrow so good night from me.  xxx

Ramblings of introducing oneself to diary...

Dear Diary,

 

This is my first diary post in this blog. I'm Katie and I'm twenty-seven years old. I live in South Cumbria and I have pretty much lived here all of my life.

This aim of this diary is to write down my experiences of living with a rare condition and write an honest insight into it to help raise awareness. I'm getting to the stage where it has started to affect me more so with chronic pain and I feel there should be more done to raise awareness not only to the general public but also to the medic profession.

I think in everything I've written about my E.D.S previously, I have somehow skirted round how it really affects me, maybe I thought people wouldn't want to read something so personal or whatever the reason, I'm not sure of. Some people it is a case of 'everybody wants to talk about a freak, no one wants to dig that deep' I can't explain why this is like this for some people, maybe it is embarrassment or feel they are prying into something they don't know about...

I have made a few videos talking about what E.D.S is so please feel free to venture to watch them. Over the course of these diary posts, I am sure you will get to understand more about EDS thoroughly better than explaining it in medical terms.

I hope you find whatever it is you are hoping to gain from reading my diary posts and please bear with me as you will understand it isn't always rosy living with this condition.

 

This is a link to my Facebook page...

http://www.facebook.com/groups/248252968558705/ 

 

This is a link to my YouTube videos...

http://www.youtube.com/watch?v=fn-_cAQ4lGs&feature=share&list=UU1wh9H269G_TyX4TZW4ADtQ

 

This is a link to my other blog which has random topics such as what I've been up to ecetera...

littlemissdinky.blogspot.co.uk

 

Thank you for taking the time to read this and I hope you will stay with me...