Wednesday, 11 July 2012

Why do the positives always end up as negatives?

After having no spoons last week and having another 2 sick days off from work I had booked into to see my GP. A few positives came from the appointment for once but they were accompanied by negatives. 

All the blood tests I'd had done the week prior came back satisfactory, I'm not anemic anymore!! Doesn't really explain why I still keep going dizzy and i'm still keep taking the odd iron tablets so that it doesn't drop again so I'll have to see how it goes.

My blood pressure was a bit higher than normal and my heart rate was too fast, especially for being 8.30am. I explained what had happened a few days before with the palpitations lasting for days and not hours like I usual. GP's answer = cut out all caffeine! I have no idea how I'm suppose to last without caffeine at work!! I have cut down a lot and been drinking decaf but still allowing myself to have tea. Still getting palpitations so no change there.

I also received my MRI results this week. I have no prolapsed disks, not that I ever thought I did have and saying I've had nerve pain and tingling in the same places for nearly 8 year, I think having prolapsed disks would have made it a tad bit more unbearable than it has been! No idea why they told me this tbh. 

What they did say is that I have nerve irritation and damage. No Sh*t!! I'd always told them that's what I thought it was, but they never listen to the patient, they always just gave me more physio!

I did however get some new tablets to try, not for the palpitations but for the lack of sleep due to my muscles twitching through the night and keeping me awake and the nerve pain. 

After speaking to a few people on facebook and twitter about the new medication I was a bit weary of taking them. They're called Amitriptyline. For those of you that have heard of them and already take them, you'll know why I was a bit hesitant. For those of you that don't, here's a little insight:

Amitriptyline is an anti-depressant drug but is now probably used more commonly for pain than for its original use. They work on the nerves dealing with the pain by altering the levels of chemicals in the brain. These anti-depressants, or tricyclics, increase the levels of neuro transmitter by blocking their re-absorption.They can have a lot of side effects, mainly sedation, dry mouth, fast heart rate and weight gain. 
For those of you that want to know more about Amitriptyline I suggest you look at Wikipedia

I decided I'd wait a few days until I started the new meds as I was going away for the weekend in Northumberland my Mam, Sister and Nephews, I knew there'd be wine involved. 

Plus I think my pill box is already pretty full without anymore being added.

By the time i'd drove up the A1 for nearly 2 hours I was aching like mad. People might not think that driving is strenuous but for me it is. My arms we're tired from holding the wheel, right leg was aching from keeping the pedal pushed down and my left knee was in bits from using the clutch. Not to mention the numb bum and aching hips, back sacrum from not moving! I was so tempted to take my new meds and go to bed but instead I opted for wine.

I was right, there was lots of wine involved once the kids were put to bed. It obviously ended up with feeling rubbish the next day. Morning pains were emphasized and also the lovely headache to deal with, self inflicted so no sympathy.  

I overload my tens machine for the cramps in my legs and now have no stick left on the pads and need new batteries. (Mental note to self - go buy more pads and batteries!)

I started to feel better around lunch time and after the 2nd lot of meds we took the kids swimming. This was Bobby's first trip to the baths and he loved it! I took the chance to do something that the physio's always tell me to do and attempted a few lengths of the pool. For someone who used to swim for Gateshead (my home town) when I was younger, i'm pretty rubbish at swimming. No stamina whatsoever! I managed 4 lengths (Embarrassing).

Me & my baby on his first trip to the baths.

I knew there was a reason why I never listened to the physios advice and go swimming. 


One thing that I haven't mentioned in my blog so far is that I suffer with eczema. It used to be acute. It got so bad at one point that I had to make trips to the hospital twice a week to receive light treatment. I wasn't even put on a waiting list. As soon as the dermatologist seen me he started it that very week. After the 3 month of treatment, mountains of steroid creams and sunbeds I've been able to keep it under control. 

After swimming I broke out again. Not bad though. But I certainly don't miss the riving and scratching myself until my skin bleeds. Good job I always carry steroid cream in my bag and after a shower and a layer of cream it settled down.

Returning home after our weekend away, as you can imagine, I was pretty tired as anyone would be. I decided I'd have an early night and start my new tablets. After warnings from people of how they felt in the morning after taking these pills I was a bit worried I wouldn't get up for work. 

I did get up, really easily in fact.

I felt AMAZING!!!

I had no pains in my legs, no headache, no tiredness - The best I'd felt in well over a year! These tablets are miraculous!! 

Or so I'd thought.

Today I've woke up feeling like a zombie, in agony, feeling sick and dizzy. These were the side effects people told me about. I just thought I'd been lucky and the tablets actually agreed with me.

My pain killers have also decided not to work today so guess what??!!  - Another sick day from work! If I was my employer, I would have sacked me by now. This sh*tty illness has made me unreliable and incapable. Not really hitting high on the employability factor at the minute.

To add to all the stress of not knowing when I'm going to be bad I have just over 2 weeks left till our wedding. I still have all the bouquets, centre peices, table plan, order of services, place cards and music to sort out.

I was planning on my next post being positive but there always seems to be something negative to counteract the good.

So the positives v negatives I've had this week:

+ Bloods all fine                                 - Still going dizzy
+ MRI/ No prolapses                          - Nerve damage and irritation
+ New medication                              - Side effects
+ Weekend away                               - Pain from driving
+ Wine                                               - Emphasized morning pain/headaches
+ Swimming with my baby                  - Break out of Eczema
+ Wedding coming up soon               - STRESS!!

I'm hoping that the letter I got this week to say I have an appointment with a HMS specialist at the end of August is all positive and has no negative outcome.

+ Appointment with the specialist         - None as yet - PRAYING THAT THERE ARE GOING TO BE NO NEGATIVES 

Hope your all having a positive week!!

Stacey xx

Tuesday, 3 July 2012

Spoons on strike! :(

I wasn't expecting to add another post so soon after my last but what a nightmare i'm having!

My spoons have gone on strike!! 

It's as if they won't replenish. Not with rest,  with coffee, hot baths, energy tablets, pain relief or any other way I usually blag extra ones. 

I know I had a pretty heavy weekend. At the races all day Saturday and then out for Lunch on Sunday but I usually start feeling half human an hour or two after my first lot of pain relief. 

Yesterday, this didn't happen. It still didn't happen after my second lot. I felt dizzy and weak. I put this down to not having much breakfast  or the anemia and had some soup, a load of bread and a Complan build up meal for lunch. I still felt dizzy.

By the time I finished work I had taken my third lot of tablets. The pain and dizziness still hadn't eased up and my legs were in cramps. I was getting worse. Not ideal for driving home on the motorway.

I really thought I was going to have to pull the car over onto the hard shoulder. My vision started to blur. I was getting high pitched, tinnitus like noises in my ears. I actually felt drunk.

I managed to get to Robs parents to pick up the baby but there was no way I was capable of driving with him in the car. I wouldn't chance it. I had to get Rob to get a taxi to his mams so he could drive us home.

By the time I got home I was having really strong palpitations. I could feel the pulse beating through every bit of my body. I was being sick. My whole body was twitching. I was starting to panic. 

Hello Anxiety. Go ahead and make everything seem worse than it is why don't you! Can someone tell me why Anxiety is linked to HMS? As if we don't have to put up with enough.

From the minute I got in I lay down trying to get some sleep, hoping it would all stop. It didn't. The cramps got worse. The palpitations started to hurt. The twitching became more frequent. I know it was just because I was panicking so done nothing but lie in bed and TRY to sleep.

I was still wide awake at midnight. The burning cramps, twitching and muscle jerks were keeping me awake. I had an attack of IBS which I can only describe as labour type pains. Absolute agony. Another lovely related symptom of HMS!

I had no energy left, not even enough to sleep!!

I think I managed a few hours but it's obviously done me no good. I've woke up no different. The tablets still haven't had any effect. My legs are still burning. Every muscle is aching. Every bone is cracking. I'm still dizzy. 

I'd do anything to get some spoons back!

I feel useless. I managed to spend all of half an hour with my baby yesterday and again Rob had to take over and do everything. I've had to ring in sick at work today. Rob has taken Bobby to the childminders so I can get some rest and try to pull myself round. Feel like one big Epic Fail!

When will I wake up and not have to think about getting up to take tablets? Is that ever going to happen? I can't see this ending anytime soon.

Maybe if I just had some decent (deep) sleep my muscles would have to time to relax/recover and maybe stop hurting as much the following day. Why can't my GP see this? Why won't she change my medication when I've told her it's not working? Its easy enough for anyone to look online and see what is suggested for HMS. Why hasn't she done that? I know I have plenty of times! I know what I could be taking! I just don't want to seem like I'm seeking medication.

I suppose I've just got to wait it out and hope my appointment with the specialist comes through soon. 

The uncertainty of this condition is so annoying! I have no idea when I'm going to have a good or bad day. Living day by day and trying not to plan ahead in case I have to cancel. 

I'm getting married in just over 3 weeks, and hoping to have a hen party to. What if i'm like this on our wedding day? Fingers crossed that's not going to happen.

The  whole point of me writing this post is to find out what others do when you've ran out of spoons. I'm currently lying in bed, surrounded by pillows, glass of water, boxes of tablets (all types) and the remote for the TV. I'm not moving until I'm hungry.

Have you ever had one of those days when no matter what you do, or don't do, you can't seem to reclaim any spoons? 

Please comment with your answers, experiences and suggestions to help others. Hopefully this post along with your replies we will help people if they ever find themselves in the same situation.

Now, time to try and get some sleep!!

Stacey xxx

Sunday, 1 July 2012

Understanding? Or not!

Hello again and thanks everyone for reading! Well over 1000 blog views since my first post last week!

Since my last post a few days ago I've been back to my GP. I'm still feeling dizzy and lightheaded even though I've been taking iron tablets for anemia and for loosing weight without any reason. I also mentioned that I didn't feel my pain medication was working as well as it should be. I even pointed out that the specialist that I'm waiting of an appointment for doesn't suggest the medication that i'm on. My GP didn't agree, or didn't actually understand, and won't change my medication and instead she's chasing up the MRI results and specialist appointment I'm waiting for to get further advice before any changes are made to medication. At least somethings being done I suppose. 

I've now had more bloods taken to check up on my anemia and been put under weight observation. I've been advised to drink Complan or Protein shakes to keep my weight on. My wedding dress is not gona fit in four weeks time if it continues to drop off like it is and i'm starting to get worried!

I've never been big. I've always hovered around 8 1/2 to 9 stone. Pretty healthy for only being 5 foot 2inch. I've now dropped down to 7 stone 12. I know it's still within a healthy BMI  and most people would love to have this 'problem' but it's at the bottom end and I'd rather have a little bit of meat on me instead of starting to look like a skeleton. I don't really look like a skeleton, but I don't think having to buy size 6 clothes is not where I want to be!

I've also received my Occupational Health report this week. What a load of BALLS!! To put it politely :) Apparently, I should carry on duties as normal, unrestricted, and my responsibility of evacuation of the whole buildings patrons and staff should be passed on to someone else. Not actually possible if I'm to carry on working late shifts, against the Dr's advice on my 'May be fit to work' note, when there is no one else eligible of doing so after the hours of 9am -5pm!  -As predicted, what the lovely people at OH did suggest doing was a work space and desk assessment! Yes, go on then, because I spent most of my time at my desk when I'm the Duty Manager of a Entertainment Venue! IDIOTS!! Obviously they did not understand one bit about my role within the company and how physical my job can be! 

This was the reply they got to their report:

Dear Dr Blah de Blah (Name change, obviously)

Thank you for taking the time to write the report about my condition and including suggestions of how I may be able to stay in work. Unfortunately I do not think that anything you have included is actually going to beneficial to me and my condition to help me keep working.

The first thing I would like to bring up is there are a few statements within the report that I don’t agree with.

‘’Her condition can be exacerbated by extremes of movement on a repetitive basis but I believe her job does not entail this’’ – My Job involves a lot of movement. It includes periods of prolonged standing and walking the building which is obviously where I am having trouble as walking and standing for long periods of time causes me pain and I regularly have to use a walking stick to support me throughout my shifts.

‘’but at the same time there is generally more benefit in the condition with exercise as opposed to complete rest’’ – There is a massive difference between exercise and being on my feet for most of a 8 hour. The exercises which I have only been advised to do are ‘light’ exercise such as Yoga or Pilates. This does not anywhere near compare to the nature of my job. If I over do exercise I get worse straight away. If I don’t do light exercise for about a week I then start to feel the deterioration. The pain is not as instant as it is when I’ve been busy at work.  

‘’If Miss Middlemiss does any work at a computer it would be appropriate to have an individual risk assessment done of her work station.’’   - I really can’t see how a desk assessment or even a new chair will make any difference to a connective tissue disorder. I know what posture I am suppose to have at my workstation and have the fact sheet from Occupational Health pinned to my notice board next to my computer.

‘’Possible association of injury or illness with work: None’’  - I know that my illness was not caused by work but before I returned to work I was getting better. The last month has pushed me right back in my recovery therefore the illness has worsened with the association of being at work.

‘’Opinion on applicability of the Redeployment Procedure: Not applicable’’ – This to me seems the most sensible option to help me recover. There are other departments that don’t work such physical roles with the Gala. Why has this not even been considered?

‘’Miss Middlemiss did state that there was a possible concern with regards to accessing a fire alarm in the time needed to fit health and safety requirements, the main problem she has is with accessing this fire alarm switch in the time needed, I do not feel this should ultimately be a restriction to Miss Middlemiss in relation to the unlikely event that a fire would actually happen. However if it was thought to be a concern I would suggest that that part of her role be delegated to someone else.’’ – This is one of the main responsibilities of my role.  I am there to evacuate all patrons and staff in the event of a fire or any other emergency. The role could be passed to other member of management when I would be on a day shift but there is no other employee in who would be able to do so if I was working a late shift.

‘’Generalised muscular and joint pain, along with fatigue.’’ – Chronic fatigue is a big issue with this syndrome I suffer with. I would like to know how other employees of the council who suffer with Chronic Fatigue have been given reduced hours/phased returns when they are only suffering from that one symptom. CF is one of my many symptoms and you’ve basically said I’m fine to continue work as normal but have made changed for other employees.

‘’Miss Middlemiss should be given every opportunity to be able to work in her fulltime normal role unrestricted’’ – This has completely ignored the advise which was wrote on my ‘May be fit for work’ not from my GP. The main thing I feel you have ignored is that I live 20 mile away and work late at night after taking a full day’s worth of strong medication. I stated I was drowsy and fatigued towards the end of the day but this has also been ignored. You’re suggesting that I continue work as normal when if the advice is not followed on my note I am in my right to go off on sick leave.

I explained to you that I felt that work had made me worse and I feel that this report has no necessary information for my employer or suitable suggestions to help me stay in work.

I will forward the report to my employer along with this letter with the hope that something can be done in house to help me stay in employment.

Yours Faithfully

Stacey Middlemiss

This letter was then sent to my bosses line manager with the added information that that if nothing was sorted out for me I would have no choice to go off sick, as I was in my every right to if the advice from the note was not followed. I would also be wanting to put in an official complaint of why no risk assessments had been done once I returned to work and most importantly why my 'Return to work note' from the period before my maternity had been signed off as fit for work and without me being there! The fact that if this not had of been filled in by myself, as it was supposed to have been done, I would have put that I wanted a referral to OH. I may have been given the opportunity of a phased return, reduced hours or redeployment until I got a bit better. But no. Carry on as usual and make yourself ill why don't you! Massive amounts of 'Care of Duty and Understanding?? ERMMM NO!!! I don't think so!

You can imagine, if this came through to you as an employer you may want to act upon it, quickly. They did. As soon as I got to work that day to start my shift I had a meeting with my line manager and her line manager. It was agreed that I'd be put on day shifts and lighter duties until my flare up settled down and I felt fit enough to return to my normal role. The only problem is its left me with nothing to do! I'm bored! What a mindless job if you have absolutely nothing to do but basically do a bit of cashing up on the morning, maybes a few orders of stock and nothing else! Can someone give me something else to do, please!! 

For a bit of background info, I work in an events venue and have a BA in Popular and Contemporary Music. As you'll know most events such as music, comedy and theatrical shows, are during the evenings. I've put on events myself, marketed them myself, know about music/event business, it was part of my degree for godsake!! There must be something I can do in this EVENTS VENUE! I can't accept sitting around at my desk like a spare part!! I'll go stir crazy from doing sweet FA!!

This is not the way I've been brought up. I need to work. I love to work. I love the Arts and Entertainment industry! I have a load of ideas! I have no one to listen to me! 

Is this ignorance? Or because they just don't understand? I'm more than capable! Just let me do something!

Hopefully someone will listen soon!

The last thing i'd like to share my day at the Northumberland Plate. I'll try and keep it short, I know this post is lonnnggg!!! 

It was unsure if it was to go ahead with the severe weather we had this week. Flash floods and storms left the end of my street looking like this!
This is the local pub and car park. You can't see any cars as they're all under water!
Luckily it did go ahead. My babysitting arrangements and early morning hair appointment didn't go to waste!

I don't really look forward to days out anymore. I can't be bothered to stand. I don't have the stamina. 

I go to the plate every year and know what its like trying to get a seat. We got there early and I took my walking stick as I knew I'd be bad later on in the day. I would have took the crutches but would have had no hand to hold my bag! 

With us going in so early we managed to find seats and a table. We (not me) dragged seats across the field so everyone could sit down. The weather, although was mostly sunny, kept having little showers, most of us kept going inside to protect our hair! Those that didn't stood out in the rain, with brolleys, just to keep our seats and table. 

When we came back from the bar/toilets etc, some women had decided to take our table, even though there  were people their saying they were keeping it for us! I ended up having an argument with them. They had apparently said 'well there's no one there now and we're not moving!' 

For anyone that knows me well, I can't keep my mouth shut.  I ended up arguing back and if the drinks hadn't of been so expensive she would have had mine over her head! 

They ended up moving a few minutes later. It may have something to do with me telling everyone that returned to our group how ignorant, and what stuck up bitches they were, (I shouted everything loud enough so they could hear) or the fact I decided to chain smoke and blow every bit in their face! Yep, i'm a bitch when I want to be! I don't make plans to get place early to make sure I have a seat and it to be taken away when I make a trip to the toilet!!

I also found out what the walking stick comes in useful for, except from the obvious. The queues were massive as usual, I was aching as usual, luckily there was a bouncer on the toilets, not as usual. Don't ask me why, but he was letting everyone use the disable toilets. Again, couldn't keep my mouth shut and spoke to him quietly about everyone in the queue using the access toilet before me when I had problems standing for long periods of time,. He let me go straight to the front, as he should have, we did ask if anybody else needed to be in that queue but they didn't.  No queues for me then.

One thing that I can't complain about :)

I did have a great day but as always the tablets and pain got the better of me. My hips were in agony and I just wanted to sit. When I was sitting I felt as though my bum was bruised!! I've lost a lot of weight, as I already said, I feel like I have nothing to cushion me when I sit down so it just feels like I'm sitting on bone!! I think i'll have to start carrying a cushion around with me lol!

We went for a meal in town after the race meeting had finished and I felt that sick and dizzy from drinking on the tablets, not that I'd had much to drink but I had to leave the restaurant before everyone had finished their meals.

No wonder I can't get excited for anything anymore. I don't know if anyone else has this problem but I always seem to end up feel bad and going home early even if I don't drink much or ending up far too drunk!! There's no happy medium anymore. I want it back please!!

I suppose the only point on 'understanding' the section about the races has is that I know for a fact I will have people questioning why i'm not fit for work but I'm fit to go out all day drinking and socialising with friends and family. Well actually i'm not. I have to find a seat wherever I go. I couldn't go into a bar and stand around and have a dance like I used to. I don't really enjoy myself. I set alarms on my phone so I know when to take my tablets.

 I do it because I want to feel normal as I possibly can! 

Having this condition doesn't mean I have to stay in the house, not go shopping or not socialise. It means I have to take things easy and manage the physical aspects I face everyday. 

I hope this helps you understand and makes you think about things before you judge anybody else that suffers with an invisible illness. 

Just remember next time you ever feel the need to have a go at someone for using a disabled toilet or a disabled parking space. 

You have no right to question anybody with a disability. Even if their young, look healthy and look fit like I 'sometimes' do, (when I'm not limping!)

You have no idea of their medical history, they might suffer with an INVISIBLE ILLNESS. So please think and try to understand!

Love Stacey xxx