Dealing with breast cancer and HMS/EDS

It's that time of year again, October, no I'm not talking about Halloween, or the beautiful russet colours of the leaves on the trees, or the fact I had to find a sweater out yesterday because the weather is turning chilly. No I'm talking about breast cancer awareness month!

I was diagnosed in 2005, I didn't find a lump myself, I was turning 50 in the July (yes that means I shall be 60 next year, eeeeeek!) I had an appointment come through the post to go for my first routine mammogram. I knew you are sent an appointment for a mammogram when you are 50 but this was the beginning of February, my 50th birthday was not until mid July, how dare they send for me 5 months early?! I felt slightly offended, how could they send me for a mammogram at 49, I had ages to go until I turned 50, I hadn't noticed anything so did I need to go?

I put the letter in the bin!! Stupid, especially considering what happened, but I didn't want to go, felt a bit embarrassed, felt slightly miffed that at 49 I was being sent for a test meant for a 50 year old, I didn't want to be 50, I certainly didn't want any early reminders! I didn't need one anyway! How daft was I? Luckily my husband, Graham, fished the letter out of the bin when he realised it looked official and told me I was going, no arguments I was going. It was half an hour out of my life, I didn't even have to go to hospital, it was at a mobile unit in the next village, parked on the clinic car park. I hate hospitals so that did make it easier.

The mammogram didn't hurt, slightly uncomfortable and a bit squishy, but ok really!

Three days later a letter came to say there was a problem, I needed to go to the breast unit at hospital. I shook when I opened that letter. I cried. I rang Graham, I cried over him. He told me try not to worry, it might be nothing.

When we arrived on that Tuesday I was ushered straight through to have a scan and needle biopsy, I asked straight out do I have cancer? I was told yes, they did think it was cancer, you could see on the scan the tumour was calcified, a sign it was not right. My breast was numbed and a long thin needle inserted into the tumour, it didn't hurt surprisingly. Everyone was so kind, so caring. I had to then go out into the waiting room and tell Graham they thought I had cancer, it was very hard to do, he said maybe they are wrong, perhaps the lab results will be negative. I knew though.

We had to return next day for the results, yes it was cancer but they had caught it early, it was 1cm, I would have an operation to remove it, probably followed by 15 sessions of radiotherapy, that would be it. No I shouldn't need chemotherapy.

Telling my elderly mum and my grown up son and daughter was awful, I tried to keep positive but it's hard and I was scared. Mom couldn't speak, my daughter shook for hours, my son was quiet but trying to stay positive.

I had my operation a few weeks later, it took longer than expected, when I came round the surgeon said he removed a lot of tissue to ensure nothing was left, he also removed 13 lymph nodes to test.

Soon afterwards I went back for the results, the cancer was grade 2, it had spread to three lymph nodes making it stage 3, I needed chemotherapy, it was fast growing and aggressive. I needed aggressive chemotherapy to combat the disease. I had to fight. Devastated is the word for how I felt, how we all felt. I wasn't expecting to be told such news and I was very frightened.

Apparently I had shown signs of cancer had I but known it, Orange peel skin and dimpling, it never crossed my mind that was a sign. Now I know I urge people to check themselves carefully, go to seek help if you find something. It could save your life.

I was very scared about having chemotherapy, I knew it could make you feel so ill and I didn't know quite what to expect, would it be tablets to take, injections, a drip? Would I loose my hair? It was fear of the unexpected, as well as fear of the chemotherapy, how long would it take, how poorly would I feel? Could I go through with it? Having seen my father in law go through treatment for bowel cancer I had actually told Graham I wouldn't want to have chemotherapy, I had said in the past I would refuse it, so he was very worried when it came to it that I might say no I can't go through with it. When I was faced with the reality of my own situation I realised I had a lot to live for, a wonderful husband, two brilliant children, they might both have been in their twenties at the time but they were still my babies, my lovely mom, great family and friends who rallied round us to show their love and support, an invaluable thing in itself. I had to have chemotherapy, I had no choice. I owed it to myself and my loved ones.

The first few sessions involved a nurse putting an iv needle into the back of my hand and very slowly pushing the bright red epirubicin drugs into my body, she gently rested my arm on a pillow and sat in front of me, chatting all the way through to keep me distracted and relax me. It took over an hour, I sat on a comfortable recliner armchair, as did other patients having various kinds of chemotherapy and Graham was able to sit with me. I had to have it every three weeks, and I had four sessions. After the first session I was very sick, despite being given anti sickness medication, and eventually had to have the district nurse come in to inject my anti sickness as I couldn't keep it down, the emergency doctor came to see me at home after that first session and it was him who sent the district nurses in to me. After five days thank God it stopped and I began to feel a bit better. I felt spaced out but by the third week I felt better, though not relishing the idea of the second chemotherapy session. I had to have them every three weeks.

I saw my consultant before my next session and told her how sick I was, she doubled up the anti sickness and from then on I was sick on occasion but mostly felt sick for the first week at times then was not too bad for the rest of the time, a bit tired and spaced out but I rested when I needed to and everyone rallied round to help. My hair started to fall just before my second session, it got thinner and thinner, coming out in clumps, it would be all over my pillow, the furniture, everywhere. I had a shower on the Sunday before my second chemotherapy the next day and most of my hair disappeared. Thankfully I had already seen the wig lady at hospital and had her number. I rang, reluctantly as it was Sunday, and she was so nice, she had the wig I chose, come over to my home she said, I will shave off the rest of your hair and fit your wig. Once my hair had gone Graham told me I looked like my dad. That helped. Not!

Everyone said my wig looked good, but it felt uncomfortable and a bit itchy, I prefered wearing a bandana. The positive to having no hair was not having to style my hair, which I'm no good at, I just popped my wig on.

After the first four sessions of chemotherapy finished my radiotherapy began, you lie on a big table with a huge machine turning round you and laser beams directed at the spots to be zapped. I had 15 sessions, my skin burnt quite badly and became infected as the blisters that formed burst, so I had dressings on. Nobody warned me about that.

My next sessions of chemotherapy were different, I had it via a drip this time and it took over an hour. I had to take an antidote to stop the chemicals working after several hours which was a bit scary. I had one a week for two weeks, then two weeks off before the next session, eight lots in all. I felt a bit better than with the first type of chemotherapy though it could make you prone to bladder infection as it sat in the bladder, I only experienced that once, and wouldn't want to again.

Chemotherapy was due to finish in October, we decided to have a few days away in September as we needed the break. On our second day we had a phone call to say my lovely gentle kind mom had been found dead, she collapsed on the floor in her flat, our daughter found her very much loved granddaughter, it was too late. We were heartbroken. Mom was 84, she had been fine, it was unexpected and a terrible shock. The bottom dropped out of my world. Dad had passed away two years previously and I was still struggling with his loss. To loose mom was unbearable, she was my rock. I got it into my head she had gone in my place, then I thought I wouldn't make it, she would take me with her and had gone to look after me. Stupid, irrational thoughts but my life was turned upside down and I couldn't cope. Thank God for family and friends, thank you for all the positive vibes, the cards wishing me well, the flowers and chocolates, the love and support. Thank you from the bottom of my heart. Xxx

My chemotherapy finished, I carried on because I knew it's what mom would want and I looked forward to the end of needles and hospitals.

It didn't work out that way. Just before Christmas I found out my tumour was HER2 positive, a lot of people with the same disease had been fighting to get the drug herceptin approved, it was expensive, many thousands of pounds, people had died waiting for NICE to approve it, the fight was all over tv, newspapers, radio. I prepared to join in.

I was lucky, my doctors put in a request for me to have herceptin, I was told it was a waiting game. I had a phone call just before it was announced on the news, from the primary care trust, to say I had been approved to have herceptin. Then it was announced on the news that herceptin had been approved for use on the NHS, for everyone.

And so began yet more treatment, thankfully unlike chemotherapy I had before herceptin didn't have too many side effects and I felt OK on it. I had to go every two weeks for a year and again it was administered by drip into an iv in my hand, it took an hour and a half each time as it had to be very slow, so I did a lot of reading! The first session made me go very very cold and I passed out, frightening my husband and the nurses, but I was fine after that first time, though did need to wear warm clothes as it could make you feel chilly.

My hair had started to return in the September while still having chemotherapy and by now I had a head full of curls, most unusual as my hair came back in tight curls, very soft and fluffy much as it had been as a baby! I even went abroad for my daughter's wedding in August of 2006 whilst having herceptin so you can see it wasn't so bad, I could never have managed it while having chemotherapy.

It's now 2014, I'm still under the hospital as the cancer was so aggressive, I was discharged from oncologist this year and have been told I should be discharged from the surgeon next year. I am cancer free and alive, despite my diagnosis, my family and friends helped me through my two years of treatment and I am eternally grateful for the love and support. It's almost ten years since I was diagnosed with an aggressive fast growing cancer and I'm still here to tell the tale. I have other health issues, hypermobility syndrome, arthritis, degenerative disc disease, but that's a whole other story. If I can do it, you can do it.

If you find a lump, if you notice strange changes, Orange peel skin, discharge, pain go and get checked.

If you are asked to attend for a mammogram, go!

If I had not had that mammogram it might have been too late, I might not be around to tell this story.

I am still here nearly 10 years later, so don't despair, stay positive, cancer can just get lost.

By the way I am now grandma to a beautiful four year old granddaughter, who I might never have met if I had ignored that letter. Now that's an incentive!

Love and good health to all. Xxx

Back spasm

I got up this morning only to have my back go into spasm as soon as I stepped out of bed, I was attempting to dress, shouting with pain as the spasms kept coming, making me feel as if someone was stabbing me in the back!
I've had muscle spasms in other places before, my ribs, my toes, my chest, but in the large back muscles they stop you in your tracks!
I took pain killers and my anti inflammatory, then I got up gingerly trying to move my body as little as possible, not an easy feat whilst trying to get to the bathroom then down the stairs. Good thing I was the only one home, everyone would have wondered what I was shouting for but I couldn't keep it in, the pain of a back spasm is incredibly bad and trying to move, albeit slowly and carefully, is very difficult!
I managed a few cornflakes for breakfast and even though the sun was shining and it was a warm morning I realised I just had to sit and rest to wait for the spasms to pass and for the medication to take effect.
Eventually I deemed myself just about OK to go out, I can't walk far so I use a mobility scooter these days so I moved very slowly and off I went. Slowly! The sun shone, the warmth of the sun and getting out into the fresh air helped, though my outing was rather painful I did enjoy getting out even if it was only for 40 minutes or so, it raises the mood rather than being stuck indoors. So even if you are in chronic pain, try and get out of the house if you can and get some fresh air and sunshine, even if it hurts, it helps you cope, it helps me cope.

PAIN AND COLD AND ARTHRITIS.

It's gone colder and I hurt, some people say it hurts more in colder weather when you have arthritis, some people say damp weather makes the pain kick in, but to be quite frank I can't say I have found my pain getting any better when the warmer weather arrives, I just feel pain all the time, no matter what the weather is doing outside. My pain increases when I overdo things, when I attempt to walk even short distances, when I sit for too long without changing position, particularly if the seat is not comfortable for me in the first place! I find the key is to pace myself, though it can be hard to recognise when you reach that point of having done too much, you often don't realise it until you have gone just a little bit further than you should and then it kicks in, ouch I must stop, but now I can barely move to get myself to a place where I can rest and be slightly comfortable. If a job needs doing, it's difficult at times to stop in the middle and think, I must rest, I must just sit down for a while. If you don't you know very well you will pay for it, but it's hard to just drop everything and stop what you are doing, and often very frustrating! I have been known to overdo it, not pace myself correctly, and not particularly pay for it the same day but the following day I can barely move and my energy has deserted me. Maybe it's adrenaline keeps us going at times we need to keep going, then when the body knows it can relax it gives up and won't let you do anything until it recovers slightly. I'm not talking anything in particular here, it might be the family round to visit and you make cups of tea for everyone, not even a meal together, and it will prove too much. It depends what you are capable of in the first place. To some people even just making a sandwich or a cup of tea is a big deal and requires more energy and physical ability than they have. One person's pacing can be very different to another's, same as one person's physical capabilities can be vastly different to another's. One problem with ehlers danlos hypermobility syndrome is that it is invisible, and even though a person may look fine to other people, that person may be in great pain. Your knee can just give way without warning, your hip can slip, and I can tell you that really hurts, your ankle just goes from under you causing a stumble, your back can lock, your jaw can get stuck if you open your mouth too wide to yawn! All kinds of weird and wonderful things can happen if you are hypermobile, it might be a good party piece when you are younger to be able to do the splits, but the consequences can be awful when you are older and your hips cause so much pain. It can be very difficult when your hip slips when you are walking along, this used to happen to me frequently when I was at school, I could do nothing to prevent it, I would just fall to the floor, the pain is excruciating. When your ankle gives way beneath you when descending steps or stairs and you fall from top to bottom the effects can be devastating, you can knock yourself out, break a bone, or even fatalities have occurred in people who have fallen downstairs, I hang on for dear life these days if I can't avoid steps or stairs! Loose over worked and over used joints can lead to arthritis as you can imagine, after all if something gets pushed and pulled around more than normal, it will eventually give way, or even break, so you can see why arthritis kicks in, and in a person with hypermobile joints it can start much younger than other people, I started with arthritis in my thirties, now two years off 60 my walking ability is severely restricted, I can just about potter around in the house, to get from lounge to bathroom, or into the kitchen for a drink, but I use a mobility scooter, or as they are sometimes referred to as a self propelled motorised wheelchair to get out and about, an aid I did not want to resort to but the pain was so all consuming before I gave in and started using it, my life was so severely restricted I was stopping in the house much more than was good for me, and I needed my independence. I still have pain, every day, but at least I can now cope a little better with my pain levels than I could before.

Its just such a rush sometimes.

Some of you who have ehlers danlos syndrome, whether it be the hypermobility type like myself, or one of the other types, will have experienced the embarrassing problem it can cause with toileting. Whether it be a sudden uncontrollable urge to "go", the onset of pain which can predict the need, the feeling of sheer panic and "will I make it in time?" This might happen on the odd occasion or it could be almost every day. Whatever happens, and however it happens to you, it can be, and probably is, so embarrassing you can't speak about it. I am cringing just writing it down here, I certainly couldn't give it voice and say these words out loud, not even to a good friend or doctor. It could get worse depending on which foods have been eaten, or you may have no idea what triggered the latest episode, I have discovered that peas, beans, sweet corn, onions, to name but a few, are now permanent "no no`s" in my diet, the pain and suffering after eating these foods can be terrible. Stress is another factor, however much I try to stay calm it's not always easy, certainly easier said than done, and if I get too stressed and it brings on an attack it's difficult to deal with. I am of course talking about ibs, irritable bowel syndrome, which seems to go hand in hand with ehlers danlos hypermobility syndrome, at least it does in my case. It's not just the pain, and the diarrhoea which is the problem, at least for me, it is the urgency, the feeling you won't be able to hold it, the fear of an accident. I think this may be due to the lax muscles and ligaments within the body, those tissues which are meant to hold things in place being weakened by the connective tissues being different in someone with this syndrome. Having arthritis too, and the associated pain that goes with it, walking is hard for me, and walking fast enough to get to where I need to be is such a huge issue, causing untold misery. I shall leave it to your imagination, believe me you don't want me to elaborate. Ehlers danlos hypermobility syndrome is invisible, it is multisystemic and complex, I walk, the little I can manage these days, with a stick. I use a mobility scooter to get around, I hurt all the time, both physical and mental, it's not easy to live so restricted a life. I often feel exhausted, whether due to the struggle my body has to function each day, the pain I suffer, or the inability to sleep soundly for long, or a combination of both. If you have the same, or similar problems as myself, whether it be eds, or ibs alone, I hope you feel just a little better knowing your are not the only one, and that someone else knows how you feel. Oh and loperamide has come to my rescue, more than once, now I couldn't do without it. I'm experimenting with a stress ball too, you never know, worth a try. 

Problems with bendiness.

I discovered, much to my amazement, and that of my teacher, that I could do splits at the age of five. We were in gym class and the teacher asked if anybody could do splits so everyone started to slide their legs outwards from the hip. The teacher put up her hand and called, no you slide one leg in front and one behind you, so we all started to try splits the way she told us and to my amazement I slid smoothly to the floor! The teacher looked at me with an amazed expression and said "did you know you could do that?" I shook my head, no I had no idea.
Of course I then discovered I could high kick, I could bend and touch not only my feet but the floor without bending my knees, and I could wrap my legs around my neck. By the age of nine or ten I was having trouble with my knees and hips, my hip would slip as I walked home from school causing me to fall to the pavement with no warning, and my knees would swell, which according to my doctor was housemaids knee ! He advised mom to bandage my leg from wrist to ankle and I was sent to school hobbling painfully, stiff legged as the bandages were so tight I couldn't bend my leg! Presumably it was meant to push out the fluid on my knee but just caused me great embarrassment and pain.
When in my twenties the back pain began, getting worse when I fell on black ice one at on my way to work, causing me to hobble painfully home, I later learnt I had ruptured two discs.
I managed for a while, I had physio and ended up at a back pain centre in a hospital in Manchester for three weeks. I learnt relaxation and pain coping techniques, and got back to work for a while.
Arthritis started to complicate matters, degenerative disc disease not helping and an unstable spine and knees which bend backwards contributed to my problems, and though I tried to keep going the pain often gets too much for me. I use a mobility scooter these days, I fought against it for a long time, especially as I was diagnosed with osteopaenia a couple of years ago and walking andk exercise keeps bones strong, but constant pain was wearing me down, walking was too difficult and too painful for me, using a mobility scooter gave me my independence back.
It's been 52 years since I found I could do splits and it was realised I am hypermobile, once the pain came it was hypermobility syndrome, now known to be the same as ehlers danlos type 3, perhaps if my doctor had even heard of this debilitating condition years ago I might have been treated differently, who knows.

Standing, walking. Wish I could!

Just been out for lunch with an old friend at a local garden centre, and although I was walking with a stick and mentioned that I have just had a mobility scooter because I cannot walk far or stand for long we still had to walk around the pet section where she looked for ages at the many things you can buy for hamsters nowadays because she has decided to buy a hamster for her daughter as a surprise for Christmas but has not yet bought the actual hamster! She bought things for it to chew on, a ball for it to run around in etc., so hopefully she will definately buy the hamster before Christmas now! I was already struggling just walking around the small pet section and standing for too long while she cogitated on which chewy thing to buy then on the way to the till to pay she decided she needed to use the toilet and left me standing next to her basket of hamster related goods while she skipped off to take advantage of the facilities which was not the best idea for me as just standing really hurts. So there was I, swaying from one side to the other wishing she would hurry up! Its true what they say, ehlers danlos mobility syndrome is invisible, even though I use a stick and walk relatively slowly it seems to go unnoticed, and I don`t like to make a fuss and say I am struggling so I suppose its my own fault as I suffer in silence. Its not even as though we were walking around for very long, but just a few minutes is often enough for me, it certainly was today, and the arthritis in my spine was causing, and is still causing, lots of pain. Its good in one way that people treat me as they would anybody else, but on the other hand when I am struggling it would be nice if, just for once, somebody noticed!

Pain in the side.

I don`t know if it has anything to do with my hypermobility, and ehlers danlos, but since about 3.30 yesterday afternoon I have been in agony!
I started having twinges in my left side, round about the area which would coincide with the bottom of my rib cage. The twinges got more and more frequent, and more and more painful, during the evening and by mid evening I was in agony with sharp stabbing pains every few seconds which made me wince and jump. The area was also very sore and tender to the touch and I could not even bare to have the material of my clothing next to the area so painful was it. The whole of my left side, from breast down to hip, radiating slightly round to the front and back was very very tender, though nothing was showing on my skin, no redness, no rash, no apparent swelling, yet I only needed to touch it and I jumped with pain. I tried to concentrate on the television, though I could not get myself comfortable, and by ten o`clock the tears were streaming down my face even though I attempted to stop them, the pain was just so fierce I could not bare it! When my husband realised how much I was suffering he brought me painkillers and a wheat bag, hoping the heat would help. I was wary about putting the wheat bag near to the tender area and I very carefully placed it as close as I was able, it took about an hour and thankfully the pains began to subside a little, soothed by the heat, or by the pain killing medication, perhaps both I don`t know, I was just glad the pain was a bit better! Eventually I decided I had to try and go to bed, reluctantly as I could not see how I would be able to sleep if the level of pain kept the same and I had to ask my husband to warm up the wheat bag once again. I laid it on the mattress and flattened it out, then carefully lowered myself gingerly on top of it. It took a while but eventually I managed to get a little more comfortable and I did drop off to sleep, though waking a few times in the night with the stabbing pains. I woke early this morning because of the pain and carefully got dressed and I have thought it best to rest today as moving around seems to aggravate it.
I have no idea of the cause but wonder if it has anything to do with my hypermobility and ehlers danlos, as I can move in a certain way and my ribs seem to dig in and hurt me. I have had something similar to this before, but not to this extent, not so long lasting and painful. Hopefully it will right itself, I don`t fancy yet another trip to the doctor!

Is it great being hypermobile? No really.

Over the years I have had problems with so many of my joints, I score top marks on the Beighton Scale, it seems that most of my joints are loose.
My ankle is so painful at the moment, it came on yesterday suddenly for no reason whatsoever, one minute it was okay, the next I could hardly put my weight on my left foot. The ankle has been clicking for some time, and I have had many times when pain has started in the ankle for no reason over the course of many years, but this time the pain radiates up the lower calf and I get a shooting pain when I put weight on it. I have put my magnetic support on which normally works in a few days so I am hoping it will take the pain away, though as yet it has done no good at all. I am barely able to hobble and am slightly worried that this pain is not the same as I usually get. I have noticed that in the last few months the pain, when it comes, lasts for longer. At one time I could put the strapping on and it would subside within 3 or 4 days, but it has been playing up a little for a fortnight now and keeps getting worse each time it returns. My GP said he cannot give me any different anti inflammatories or pain killers so he seems to have given up and I don`t quite know what to do, or where to go for help. I do find that if I have pains in one or two joints it makes me walk slightly differently to compensate for the pain site and then I subsequently get pain in a different place because I am moving my body in a slightly different way or position.
I used to think it was great being hypermobile when I was younger and my party piece was to do the splits, high kick or wrap my legs around my neck. I now hate being hypermobile as I would not be in the physical pain I am suffering now if I weren`t.

Sleeping, or not.

I have not been sleeping well lately, things on my mind but also I have not been able to get myself comfortable. Lie on one side, hip displaces slightly, pain. Turn over, shoulders ache then hip begins to hurt. I can`t win. I lie in the dark trying to still my mind, make my mind blank but then I have to turn over because my knee hurts and my back has gone into spasm. He snores loudly beside me and I despair of getting any sleep. I hear his alarm go off at 6am and groan, I can`t remember being asleep yet and it is almost time to get up.

Pain.

I asked my doctor yesterday if I could be refered to a rheumatologist. He told me it would not be of any benefit, they would only give me the same anti inflammatories and pain killers I already have on repeat prescription from him,and would not be able to offer me anything else. I asked about steroid injections and he looked horrified, telling me they have lots of side effects and I have enough problems as it is, without anything else! He said steroid injections are more for rheumatoid arthritis than the osteoarthritis I have. He showed me his own hands and told me he has osteoarthritis himself for which he does not take anything as he does not want the side effects! Thats all very well if you just have the pain in the hands I thought, but when you have back pain, both lower and upper, knee pain, your shoulder hurts and your ankle is painful and clicks aswell as the joints of the knuckles and fingers you need a bit of help! I find standing in one spot for more than a few minutes agonising and my hips and back scream with pain when walking, so much so that I need a mobility scooter. I would love to avoid taking medication, and I tried for a long time to do without, but I have reached the stage where the pain is too much and I cannot function without pain relief. I am 57 now, so maybe a rheumatologist would not have a lot to offer, but I think perhaps my GP has not taken my hypermobility into account, maybe he has I don`t know. To be told there is nothing else he can do is difficult to come to terms with, and to know I have to live with this pain, as even taking the medication I still have pain, though perhaps the edge is taken off, is very hard to bear.

EDS IS A PAIN, LITERALLY.

My right hip is absolute agony right now, so much so that I don`t know where to put myself. Everytime I move, even if it is a small movement, it is much much worse and walking, well walking at the moment is almost impossible. The pain killers have not done a thing, though I took a couple two hours ago, I have had my anti inflammatories and I am now wondering what to do as nothing is helping. I don`t even know what I have done to it, but then again my hip can sublax just by my turning over in bed, so really I don`t need to do a lot! Hopefully with some rest it will right itself, I know I can`t put up with it like this for much longer.

IBS and EDS

It has come to light that IBS seems to be connected to EDS, having had stomach problems for a long time now I can well attest to that view. Food intolerance and stress contributing to the problems in my opinion. It is restrictive and debilitating and on many occasions I have been forced to cancel a social visit because of the problems caused. Pain caused by IBS can be terrible, and other side effects which I will leave to your imagination! Sometimes the only way to get over a flare up of IBS is to stop eating, and I am often just on water for a couple of days in the hope that it will sort things out. It gets me down and can often last for days, not an easy thing to cope with.

BURSITIS

For a few days I had bursitis behind my knee, very painful, but with rest it has eased a lot. I have had it before, all part of the ehlers danlos hypermobility experience I think, never a dull moment! I was visiting my cousins at the weekend, and we were all pulling our thumbs down to the wrist, one point for each wrist on the beighton scale. Then my cousin Susan said she could wrap her legs around her neck when she was younger, and we began to compare notes,  as I used to be able to do that too. They could remember me doing the splits, though when I was invited to perform this particular trick I declined because at the age of 56 that is now beyond me! Clive asked how I knew I could do these things, and why on earth did I try them in the first place?! Frankly I don`t have an answer to that, I suppose just because I could! I have always been a fidget and can never keep still, but perhaps it was a bit extreme to wrap my legs around my shoulders! Maybe it was in gym class at school, I honestly can`t remember. I know I discovered I could do splits in gym class at the age of 5, I certainly did not know I had the ability before then! I do now wish that I had not gone to such extremes, though how much it would have helped, and whether my joints would still be in the same state they are nowadays is anybodies guess. I often see people in their 70`s and 80`s walking briskly past me, when I am struggling to walk and leaning heavily on my stick, and think to myself why is life so unfair? Not that I wish any harm to those people, I just wish I could walk as quickly and without pain.

Hurt hurt hurt hurt hurt

When I woke yesterday morning my neck, shoulder and the upper part of my left arm felt very painful. Whether I had slept in a strange position or whether it would have happened anyway with my loose joints, and having had pain in the shoulder for some time, I don`t know, but despite taking pain killers throughout the day the pain did not really ever subside totally.

Today I woke with the same pain in my neck, shoulder and upper part of my left arm. I have taken pain killers and am currently sitting with my arm resting on a cushion to take the weight of the arm and I am now waiting for the 4 hours to be over so that I can take some more pain killers so once again they may have taken the edge off the pain, but it has not gone by any means. Maybe some heat would help, or I could try my tens machine again, but at the moment I am feeling rather sorry for myself as I sit here trying to keep occupied so as to forget the pain for a while. Not easy.

I used to think it was cool that I had been born with hypermobile joints, after all I was the one at school who could do the splits, I was the one who could high kick above my head, I was the one who could wrap my legs around my neck and walk on my hands, tied up in knots. I was the one who used to make people pull a face and hide their eyes when I pulled my thumb down to my wrist or turned my arms backwards so that my hand faced in the wrong direction. I am now the one who wishes I could never have done any of those things. I am the one in pain.

THE GREAT WARDROBE CLEAR OUT.

It has taken me 4 days to finish sorting out my wardrobe and drawers. Not because I have lots and lots of clothes but due to the fact that I find it difficult and painful to do repetitive movements or to sit on uncomfortable chairs or a seat without a backrest. Standing for any length of time is also out of the question, hence the reason why it has taken such a long time to sort out my belongings! I am very pleased to have got rid of 4 bin bags of old clothes and bits and pieces and now I have tidy drawers and a wardrobe that I can actually find things in! Having to pace myself when I do anything is a pain, but the sense of achievement when I finish is great. I am rather a hoarder, and a perpetual dieter, so my weight rises and falls all the time, and I have differing sizes in things! There were, however, some things in my wardrobe that I have literally had for years, and I kept them thinking and hoping that one day I would get into them again! Never going to happen, I differ a stone or two, but I doubt I would get into clothes so much smaller, though one can hope, and besides by the time I lost enough weight they would be completely out of fashion!! So I have been ruthless for onces, and discarded anything I have not worn in a year and am unlikely to wear ever again realistically! Although I did this clear out over 4 days it has still taken its toll and I am still in some pain, but I comfort myself by saying perhaps not in as much pain as I could be if I had not taken my time and paced my activity. Its the only way to cope, I have realised, when you have ehlers danlos hypermobility syndrome.

OUCH

I decided to sort out my wardrobe this morning, it had rather a lot of things in I either don`t wear now, or cannot get into any longer, and I can`t find anything. I am quite a hoarder so I decided to be ruthless and get rid of stuff I have not worn for a year or so and have no intention realistically of wearing again. The problem is that now I have a large pile of discarded unwanted clothes on my bedroom floor and have done too much so I can`t find the energy, or the pain free movement, to be able to fold them and put them into bags. I did take one bag up and then realised it would not all fit into that one bag, but by the time I had walked downstairs to fetch it, and then slowly and painfully climbed the stairs again, I was incapable of putting much into it. I tried valiently to pop a few bits and pieces into the bag, folding them as I did in preparation to take them to a charity shop, but the pain did get the better of me in the end and I was forced to give up and leave them where they lie for now. I have to pace myself in what I do and this morning I am afraid I was too enthusiastic in my endeavours and over did it, which was my own fault. I feel better now though that my wardrobe holds fewer clothes, clothes that I can fit into and which I wear all the time, it is an achievement for me to get it sorted and it is frustrating that I am now unable to quite finish the job I started, due to my EDS hypermobility, arthritis and pain.

STILL HAVE TO LIVE WITH IT.

Next month I shall be 57 years old.
At the age of 5 I realised I was double jointed, as it was known back then, when I did the perfect splits in a gym class and my teacher had a look of astonishment on her face!
"Did you know you could do that Christine?" she asked in amazement.
I shook my head, suddenly shy of this attention, I had no idea I could do the splits, I was the only one in the class who could manage the move.
By the age of 10 I often went to school with my legs bandaged tightly from ankle to thigh. My knees would swell up and be very painful, Mom would take me to the doctors who would pronounce "housemaids knee". He would advise my Mom to put on a tight bandage, all the way up the leg, to take down the swelling! As you can imagine it was very difficult to walk, I could barely bend my leg. As you can imagine the other kids laughed at me, kids can be cruel. Nobody bothered to ask me why I was swathed in bandages, nobody realised I was in such pain. The doctor never thought to refer me to hospital to a specialist, to find out what was happening to me.
The swelling would eventually subside (after all, it had nowhere to go) until the next time.
I overused my joints as a child, well I did not know that later on in life I would have regrets, and so I would do my party piece, wrap my legs around my neck, splits, high kicks, I could even put my legs over my shoulders and walk on my hands! I could not only touch my toes with my legs straight, I could bend right over and put my hands flat on the floor, then a bit further until my forehead was on the floor, knees still straight!! Well actually I know now that my knees were not straight, they were bending the other way!
My knees would swell regularly and I would be back in the bandages, I would fall over when my hip gave way suddenly, without warning. Even then no adult tried to find out a reason why. 
By my twenties I had lost 3 babies, the doctors said it was my hormones but I now wonder if it was due to my hypermobility. To hold on to the two babies I managed to give birth to, thank God, I had to rest all through my pregnancies and was given hormone injections, one a week for the whole 9 months.
Giving birth to my first baby, my wonderful son, I had an epidural, not at my request but because my blood pressure was very high. I kept telling them I could still feel the pain, though not quite so bad. They did not believe me. I know now that with EDS hypermobilty it does not always work.
Towards the end of my twenties I started to get stuck when I bent over, I would bend to reach something from a low kitchen cupboard and get stuck, often having to ask my now 7 year old son to help me straighten. I laughed it off, not wanting to frighten my children, `silly mum got stuck, oh dear!`
In my thirties I heard the word hypermobile for the first time, and learnt it was the same as double jointed. My doctor said I had hypermobilty syndrome and that my overused joints would be prone to arthritis. (No kidding!) Already my knees were gone, I was told I would have to have replacement knees eventually, but as I have since discovered, would the operation work properly?
In my mid thirties I had a fall, black ice on the pavement just along from my house, I went down heavily on the base of my spine. I struggled to get up, the pain incredible. I managed, I don`t know how, to get back to my house. I called work "sorry I can`t come, I fell and hurt myself." Little did I know I had ruptured two discs in my spine, oh the pain.
I have never been the same since.
Gradually, over the past few years, everything has got so much worse. My back is painful all the time, degenerative disc disease I am told, my hips have now joined the party, becoming so painful when I walk that I could cry. My knees are gone, crumbling, creaking and groaning, swollen and misshapen. Other joints are starting to give me trouble now, my hands hurt, my ankles give way, my shoulder gives me pain when I move it in certain positions. Even my jaw can get stuck when I yawn so I must be careful!
I have problems with bowel and bladder, told I had IBS many years ago, this now seems to me yet another problem caused by EDS hypermobility syndrome, or perhaps both? I daresay lots of other things can be attributed to it too, more research needs to be done.
At the age of 49 I was diagnosed with breast cancer. Nothing to do with my hypermobility but even this has consequences. I had chemotherapy, radiotherapy and herceptin. I took tamoxifen for 5 years but now my hormone drug has been changed, to one which can make arthritis pain worse. Boy has it made it worse! I feel that I have to take it though, I was told it is to give me a better chance, after all I certainly don`t want a return of cancer, that thought terrifies me, and so I take the drug, and cannot walk far whether just as a result of the side effects or because of my worsening arthritis I don`t know. Maybe both.
Hypermobilty syndrome has now been reclassified as EDS hypermobilty, which used to be EDS 3. Not that a big name helps at all, those of us inflicted still have to live with it! The invisible illness as not all sufferers use a wheelchair all the time, nor walk with an aid, yet they are in pain, but it does not always show.

Don`t take up a disabled parking bay if you do not need to use one.

There was this clicking sound every time I turned over in bed - my hips! They do tend to sublax at will, and can prove very painful as you can imagine, who would think you can hurt yourself in bed?!!

We popped into town this morning as I wanted a pouch in which to keep my new phone so that it won`t get scratched. We parked in the disabled spots as the place we wanted to visit was not far away as my walking is not very good now. When we got back to the car a traffic warden was taking photographs of the car next to us and writing a ticket out. It obviously did not have a disabled badge displayed and so they got a ticket, and serve them right. People do tend to park in the disabled bays without a badge on a Sunday, perhaps thinking the wardens will not be around. It is not always permanent wheelchair users who need to park in disabled bays, those with limited mobility, who would be unable to visit the nearby shops if they had to park further away also use the disabled bays and with good reason. If you could only walk a very short distance before finding the pain too much for you, you would want to park as close as possible too!

Like doing a marathon.

Writing in blue, because I feel blue.

Yesterday we went out to get a few bits and pieces, we went into Asda and bought a toy for Poppy, it wasn`t the big Asda, it was a small Asda home store and we only went upstairs on the escalators, took the toy off the shelf, paid for it and went back downstairs in the lift as for some strange reason the escalator in this particular shop only go up, you then have to walk down a long flight of steps! We then went into the pound shop next door to get a new drawing book for Poppy so we just went straight to the section with the drawing equipment and then to the till to pay. By this time I was starting to flag and walking was becoming even more difficult and painful. I was unable to get one other item that I wanted in this shop so we decided to give a home bargain shop, just a couple of shops along, a try to see if they had what we wanted. As soon as we reached the shop I realised I had made a mistake, it was already too much for me, just the short walk along the parade of shops, not very far but obviously too far for me. We went into the shop but we had only got half way down the first aisle when I realised I could not go much further, the pain was bad, very bad. I said I was struggling and so we made our way to the exit, me walking very slowly by now, trailing behind and leaning heavily on my stick. The walk back to the car, no more than about 10 or 20 yards, was slow and painful. I kept having to stop and rest, leaning against a convenient pillar on the shopping parade. By the time I got to the car I could have cried, the pain was excrutiating, my back was screaming out in agony, both hips were so painful. I eased myself carefully into the seat and the relief I felt on reaching the car was immense. It was like doing a marathon, except I was only walking a very very short distance. Today my legs have felt so heavy and I have been in a lot of pain with my back, it is so wearing to be in pain all the time, even though I do my best to keep a cheerful face showing to other people sometimes I just can`t manage it, and I am best at home, resting in the hope that the pain will abated a little. Ehlers danlos hypermobility syndrome, grrrrrrrrrrrr.

HOPE ITS JUST ARTHRITIS.

The appointment has arrived for my bone scan on Wednesday. I have to be at the hospital for 9am and by the looks of things I shall be there for several hours. The letter came with a booklet explaining all about the scan, apparently it is a very expensive procedure and the radioactive material they will inject me with is expensive so I have to ring if I am unable to go as soon as possible. I must admit I feel like ringing and cancelling the whole thing, I am feeling extremely nervous about it. I am fine with injections, when I had breast cancer and the subsequent chemotherapy I had numerous injections over the couple of years I had my treatments, but I am claustrophobic and the thought of being in the enclosed space is freaking me out a bit. Some people have asked if it is like a CT scan or an MRI, well I am not sure to be honest, it does sound similar, except that the leaflet says it will take almost an hour, and when hubby had an MRI it was about 20 minutes, and he did not have to be injected with radioactive material! My brother in law kindly told me the other week that it was the most painful injection he has ever had! Thanks Rich! It is a well known fact that women can bear pain a lot more than men (at least thats what the nurses and doctor said on 24 hours in A and E on tv the other night) so I am hoping its true!! After all we have to bear childbirth don`t we girls? Enough said.

I am a bit worried about the results of this scan, the consultant who ordered it for me is the surgeon I see about my breast cancer, and when I said my arthritis pain was much worse he said we had better get this looked at. I keep telling myself it is my arthritis that is causing the pain, but a tiny corner of my mind keeps saying to me "it could be worse than that". God I hope not. Hope its just arthritis.