Wednesday, 27 June 2012

Thanks, Thanks and No Thanks!

Last Friday, when I first started my blog I had no idea how popular it would be. I've had so many messages, emails and tweets from people who have thanked me for helping them understand, for teaching them about something they've never heard of and for making them think differently about invisible illness. So, my first 'Thanks' goes to all you readers, celebs and people who retweeted, posted links and even included my posts on some of their online newspapers!! 

My second 'Thanks' goes to my partner, Rob. Over the last year things have been tough for both of us. I was a nitemare to live with when I was pregnant and being constantly in pain, I wasn't much fun to be around. I was an absolute dick if i'm honest. Hormones, depression and chronic pain mixed with lack of sleep turned me into Superbitch.

When I eventually got my diagnosis in April and after reading up on it, I tried to educate Rob on what the condition was all about. He obviously never took it all in as anytime I'd mention something else that was wrong with me i'd get 'Your never well' or 'Your always tired' or 'All you do is COMPLAIN!' Not very supportive comments, I know. 

This wasn't all the time though. He helped out loads with the baby, especially bath time. I've still never bathed my baby by myself as I just don't have the strength to hold him over the bath and my back aches far too much. The one time I did try I ended up letting him slip and I panicked and hurt myself trying to get him back up. Luckily Rob was in the house to take over from my uselessness.

Bobby's first ever bath - absolutely hated it!

My illness has caused many arguments in this house and with the divorce rate among the chronically ill being over 75% something needed to be done asap. We get married in 4 weeks and I didn't want to start married life with the stats piling against us.

The turning point came last weekend, after I wrote my first two posts. I asked him to read them to see what he thought. 


The posts really got to him. I don't think he had any idea what it was like for me, even though I did tell him, he must have thought I was just moaning about nothing! I think he was trying to ignore that fact that I'm ill so that everything would just appear to be normal, or it would disappear. 

I've got news for ya!! This is not going to disappear anywhere anytime soon! 

We had eventually talked about it! 

After nearly a year of me being really bad. He told me he had got angry or annoyed when I was having bad days as he couldn't do anything to help or stop the pain, not because he was annoyed with me. He used to compare his 'hard days at work' to my days lying around at home, not realising how physically drained I always feel and that just staying home looking after a baby  on my days off is just as tiring for me as it is when i'm in work.  

Now he has an understanding of HMS things have been SO much better.

I've had so many extra spoons these past 5 days it's been unreal! After a lovely apology for not listening sooner and not being as supportive as he could have been, the help I've getting at home has been amazing. Just by cooking the tea, washing the dishes and doing a few extra night feeds than normal I've been able to rest up that little bit extra. It may seem nothing to you but it makes a massive difference to me.

So 'Thanks' Rob - Thanks for reading my Blog, understanding, supporting, helping and being there for me even through all my moaning, crying and just generally being useless.

Me and my two boys.
As I already mentioned in From the Start, I'm back to work full time now. I've been back just over a month and it's not goin well. In fact its killing me. 

You would have thought as i'd had such problems with mobility before I had the baby and my role is quite physical that they might have asked me was I actually OK to return to work. 

As I went straight onto maternity leave from sick leave someone decided to just fill in a Return to Work form saying that i'd be fit!! I was never asked was I capable of doing my duties? Was I alright driving 20 mile home late at night when I would be fatigued and dosed up on Tramadol and Naproxen? 

I managed to get through two weeks and then I had to ring in sick. I couldn't move out of bed and the tablets just weren't making any difference. I wasn't prepared to attempt to drive with weak legs  just to go and sit around at work in pain. 

On the Return to Work form I had to fill in for the day I missed, I stated I wanted to been referred to Occupational Health, something that should have been done before I even came back to work.

My request was sent off. In the mean time I seen my GP. She gave me a note stating that I 'May' be fit for work. It listed suggestions, e.g. avoiding late shift patterns, light duties and number of hours worked. I handed it in. It was put in my file and nothing was changed or even mentioned. I continued to work late and still doing the same role. 

After not hearing from Occupational Health a week after my request was sent off, I decided to ring them myself. I was given an appointment for the next day. Not hard eh? 

They were as much use as a wet paper bag. He didn't know what to suggest to make work easier for me and keep me in employment even though my Dr's note was right in front of him with the suggestions wrote on!

I'm now waiting on the report being sent to me so I can agree/disagree with anything that is on there before it goes back to my manager. I wouldn't be surprised if it had something along the lines of ''We'll give Stacey a new office chair to help with her HMS''  IDIOTS!

This last month has made me ill! I felt I was getting better before I went back to work. I'd imagine going back to work would be hard for anyone after having a baby but for me it's been unbearable. To be on your feet for most of an 8 hour shift and have to be responsible for everyone in the building was hard enough when I was coping with a much lower pain level never mind when i'm in agony, fatigued and trying to hop around with a walking stick! 

My 2 days off a week are now spent in bed or lying around the house trying rest up before the next shift. You can imagine how enthusiastic my partner is about pushing myself through shifts just to come home and be an absolute cabbage! It's like my work life is coming before my family life at the minute and I need to be capable and fit enough to look after my son. 

Something needs to change and it needs to change quickly!

So in conclusion, the last 'Thanks' or should I say 'No Thanks' goes to my employers for not doing their job properly, not following and ignoring policies and procedures and making my condition worse than it was before therefore delaying my recovery! 

The hunt for a more regular, less physical and closer to home job continues!! Any offers would be gladly accepted and more than likely considered! lol 

Stacey xx

Sunday, 24 June 2012

Pain in the EVERYWHERE!!

After the great response from my first post I thought I'd get in there quick with another!

As I said in 'From the start' the worst and most annoying symptom of HMS is the chronic pain. Well for me it is anyway.

Its impossible to pin point. It's not localized. It's everywhere! One of the reasons that many people with Chronic Pain Syndrome are labeled as hypochondriacs and just dismissed by Drs and other proffesionals.  

For me the areas that are effected are my hips, pelvis, back and shoulder (left side only), neck, elbows, knees, fingers, wrists and feet. It's easier just to say everywhere.

For those of you that have never experienced chronic pain here's how I would describe mine:

Its like that burning, aching, cramp feeling you get when you've overdone it at the gym or been on a really long run or just shopped a bit too much and your feet are on fire.

If you've never felt like that before then what about when you've had flu? Or something like tonsillitis? I mean proper full blown flu or tonsillitis, not a cold and headache that so many people call flu, or the sore throats that people exaggerate. I mean the real bad doses when you can't physically move without you muscles hurting and you're stuck in bed for days, filling yourself up on Lemsips and painkillers just to feel half human. Well that's what its like for me everyday, especially in the mornings. 

The difference is that it doesn't go away with rest. It can lasts for months, or in my case, for years now. It fluctuates somewhat and I used to go for months with a pain level of about 2 or 3 which was copeable. Since my pregnancy I don't think my pain level has dropped to beneath a level 4. (10 being worst pain possible - 1 being very little pain) 
For the last 3 month of my pregnancy I'd say I was at 9 or 10 every day. Now, depending on if I've been working late or out the night before, I wake up at a 6 or 7 which is reduced to a 4 or 5 by the pain meds. 
I can't wait (and hoping desperately) for it to drop back down to a 2 or even a 0 (Doubt that's ever gona happen! But I can dream.)

The actually hurting is not the only effect of Chronic Pain. Many people suffer from depression, mood swings, fatigue, reduced activity and libido. Unfortunately I'm definitely one of those many people!

It can also lead to marital problems or loss of employment - I just pray that never happens to me. If your suffering from Chronic Pain I hope that it never happens to you either!

That's it from me, but I'd like to sign off with a poem written by a good friend of mine, who also suffers with HMS and Chronic Pain, among other conditions. I'm proud to call her a friend - she's one strong, inspirational woman!!

The Chronic

I wake up every morning
reaching for the meds,
start the day by moaning, struggle to get out of bed.
I often sit and wonder,
"Is this some kind of karma?"
Trying not to whinge so I don't drag people under.
If my pain is punishment,
I'm going to be blunt,
In a past life I must of been a massive c**t.
To live my life like this,
live, ha, I use the word loosely,
is no longer a pleasure, but a nightmare filled with cruelty.
If someone could cure me,
I would thank them profusely,
I'm tired of the battle, those I love are gonna lose me.
I no longer know my self,
I'm not the woman I was,
now I'm just a body,
where a happy girl once was.
I'm trying to be postive,
but damn it's just so hard,
Maybe I wouldn't be like this, if there were a God.
Perhaps I need a system,
something to believe in,
a small glimmer of hope might stop my pain increasing.
A mother and a wife,
somewhat deprived of life,
I want to be the woman they can depend on through their strife.
Alas it is not happening,
there's no apparent cure,
for now my life is spent thinking "how much more can I endure?"

By Michelle Clare Robinson.
Dedicated to my family and friends that love me, thank you 

Friday, 22 June 2012

From the Start

Well!! Where to start!!

As you'll see from my profile I suffer from Hypermobility Syndrome, also known as Elhers Danlos Syndrome  (type III) in my case - I'll refer to this as HMS/EDS from now on. (Save on the typing!)
For those of you that have never heard of this condition, and i'm sure there are many, its basically a disease that effects the connective tissue proteins such as collagen. The result of this is joint laxity. Some people that are hypermobile don't suffer any pain, those that do are diagnosed as having HMS, like me. There are so many symptoms that are connected with the disease but the most difficult and annoying to put up with is the chronic pain that it causes.

I've only been recently diagnosed with the condition after an agonising pregnancy and not recovering post birth. I suppose I have my beautiful baby to be thankful for my diagnosis even though having him has caused the worst flare up i've ever experienced. His little  face is the only thing that gets me through every day of living with chronic pain.

Anyway back to the start!

From a young age I always suffered with joint problems. When I was born my mother was told I had a dislocated hip. Once x-rayed, she was then told it wasn't dislocated but had developed a week earlier and that I would have no problems so nothing more was done. My mother always had trouble buying me shoes when I was younger. I would walk in on both ankles and always end up with sores from the shoes rubbing on the inside of my ankles. I now know this is because of the laxity of the joints, I have very bendy ankles!
Throughout my school years I suffered with pain in my knees and hip, the same one I had a problem with when I was born. I was advised to get physio, take pain killers and referred to a bio-mechanics and made to wear raised insole in my shoes to correct the 'wonkeyness' of my legs and my flat feet. (Another characteristic of EDS.) All of which did help at the time.

From my late teenage years I started to get a lot of pain in my upper left back/shoulder and again in my hips. Again I was referred for physio and put on stronger pain killers.

I managed fine and the pain was barely there, or at its worst it was cope-able. I was always back and forward to physio but it never seemed to make much difference so I just got on with it.

Last year I fell pregnant. This is when everything fell apart. At just 8 weeks my hip started to give way and gave me trapped nerve like pain down my leg. I went straight back to the physio who said it was just my joints loosing up due to the pregnancy hormones. I was given core stability exercise, which I had always done anyway, and I had appointments every few weeks to see how I was getting on.

I really wasn't!

After giving me a support belt, which baby did not like, and the Dr suggesting I started taking the codeine again, which I'd stopped as soon as I found out about the pregnancy, I was getting worse.

Still working full time at a local Theatre as Duty Manager I was finding it hard to keep up with the physical side of the job. By 16 weeks pregnant I was using crutches to take the weight off my hips. My Dr and Midwife fobbed me off with ''its SPD'' (Symphysis Pubis Dysfunction). Looking at the symptoms, it didn't really add up. I never had any pain at the front of my pelvis, only the back in the SI joints where I'd always had pain but went along with them, they were professionals, surely they'd know what it was.

By week 20 I couldn't walk without the crutches at all. As my job description required me to be physicaly fit and they couldn't offer me any alternative redeployment I was signed off sick. 

At 26 weeks my legs gave away completely when I attempted to make it to the toilet in the middle of the night. My partner had to pick me up of the floor and carry me. I was advised by the Midwife to go to the hospital the next day and was seen by a consultant. Again I was told it was just SPD and they couldn't do anything for me. I was then put onto stronger pain meds, (Tramadol) and made to see the consultant every 3 to 4 weeks to make sure both me and baby were doing fine.

Baby was fine. I was not. From then on I felt like I was deteriorating daily. I spent my days watching the clock and waiting to take my next set of tablet. The Tramadol made me ill. I was constantly sick. I lost so much muscle mass I looked like a skeleton with a bump. Luckily baby was healthy as ever and putting on weight as he should, he was just taking it off me!

Eventually I had to resort to a wheelchair. I would be out of breath walking with the crutches from my bedroom to the bathroom even though its about 10m away. I hated leaving the house. I became depressed with the fact that my independence had been taken away from me. I always had to have someone with me, to push me in the chair, to drive me places. It gets to me even writing about it now.

My consultant agreed that I go in for early induction. After all, SPD is only cured by giving birth! 

She gave me a date for 37 weeks which happened to be Xmas eve. To cut a long story short, baby did not want to come. After 3 days in hospital and many attempts I was sent home! Devastation was an understatement. I was supposed to be leaving hospital with a baby, not spending another week in agony!

I returned just over a week later and after a successful attempt of induction, my little boy was born naturally with no complications and with only a 7 1/2 hour labour. I suppose the only thing that ''went wrong'' with the birth was the epidural not working. The midwife told me it was. I could move around and could feel EVERYTHING, it definitely was NOT working! She only believed me after I gave birth and she had to administer 4 extra injections of anesthetic so I could be stitched!!

I was home with my family only 8 hours after giving birth and seen the New Year in with my gorgeous family! Perfect.

Weeks went passed. I was still in agony, still on pain meds, plus new ones that I wasn't allowed to take during pregnancy. I was seen weekly by the physio. Still no change. At least I was able to walk without crutches, I used the pram as a zimmer!!

I was eventually referred to a rheumy physio 4 month post birth. He gave me my diagnosis and sent me for an MRI to make sure nothing else was going on. 

I'm now 6 month post birth. I'm still waiting on the MRI results and still waiting on referrals to the local pain team and to the specialist Rheumatologist who has an interest  in HMS. Luckily for me he's based at the local hospital and the only specialist in the North East.

I'm also back to work full time. It's getting unbearable. I work different shifts every week. Sometimes day shift and sometime late, usually until 11pm. If I work late, I cant physically move the next day until the second lot of tablets begin to work. No use when you have a baby to look after. I'm exactly the same if I work 4 or 5 days in a row. I need a day to recover. I would never want to be off work sick but at the minute i'm beginning to think i'm not physically capable. 

I hate the fact i'm not as able bodied as I used to be. I hate that everything I do has an effect on me the next day. I shouldn't be like this. I'm 25 not 75! 

For those of you that don't know about or haven't heard about the 'Spoon theory'. Google it and read it. It explains how I and many people with Chronic Illness and Chronic Pain feel.

I'll be blogging about my spoons. How I use them. How I save them. How I'm not very good at all this spoon saving yet. 

Savour your spoons - you don't know when your going to need them!!

Much Love 

Stacey xxx