Monday, 29 October 2012

Adjusting Your Career Due to Chronic Illness = Admitting Defeat?

Giving up on a career in the Arts/Events Industry and taking any ordinary 9 to 5.  Is this just admitting defeat? 

If not, it really feels like it!

Admitting to myself that I'm more than likely going to have to give up on a job in the Arts/Events Industry as I can't find any 'suitable' employment? 

Waste of degree, waste of experience, waste of a love = Feeling defeated

The future for my career wise does not look bright.

After the latest appointment with my consultant he suggested a career change to help me cope with my illness which I completely agree with to a certain extent. 

My current employer has made reasonable adjustments i.e shift changes/no heavy lifting/no prolonged standing, but they most likely won't be able to make them permanent as it's not beneficial for the company. I can see it from their point of view, I work in a Theatre where the majority of performances take place on an evening, so why would they want a manager who can only work until late afternoon, can't be on her feet for too long, suffers from fatigue and sometimes needs extra breaks? 

My GP seems to think the stress of everything I've been going through lately, including job situation, is causing my symptoms to worsen so has signed me off as 'not fit to work'.  I don't really agree with her and think I should be working even if the uncertainty of where I stand employment wise does make me think 'whats the point in trying?'

Do I just apply for any old job? Or do I wait till the right one comes along and in the meantime sit like a waste of space doing nothing when I really want to be out working?

So. The job applications have begun. There have been a few. I'd say about 20 so far. Some that I don't even want. I admit that I can no longer do the 'Duty Manager/Event' type jobs but I can't seem to find anything that in the industry I want. I'd love to do something in event organisation/coordination but being honest with myself I know that there is not that much out there at the moment.

And even if the right one does come along its going to have to be one that's perhaps part time hours, that doesn't require me to work very late, is close to home, one that doesn't require me to sit in the same seat for hours without moving (i.e call centre roles), one that will allow me to get up and walk around when I need to and one that suits and supports my condition. 

See where i'm going with this?

The perfect job for me probably doesn't even exist! 

Even if there is a job like that out there it's unlikely that it's going to be in the Industry I long to work in and then the amount of people who will want similar roles will be ridiculously huge so i'm probably not going to be in with a chance anyway.

I'd happily change my career to suit my condition but completely giving up and taking any job that comes along is a completely different story.

So for the time being, i'm stuck feeling defeated by my illness.

Fingers crossed something comes available sometime soon or I can see myself hating my life in a call centre saying, 'Good afternoon your speaking to Stacey, how may I help?' about 200 time a day!! 

Feel depressed just thinking about! urgghh!

Tuesday, 25 September 2012

Chronic Illness & Disability - My tricks and tips

I know that every chronic illness and disability is different regarding symptoms and the effects that it has on a person, but the difficulties and restrictions people face with everyday life and tasks can be very similar. 

This post is to share my tricks and tips that make everyday tasks that bit easier for me and so I can save my spoons for the more important stuff like taking care of my baby and actually trying to live a normal life. 

For those of you that are new to my blog and have no idea what I'm talking about when I mention those all important 'spoons', please take a look at  'The Spoon Theory'.  I think it's the best analogy of how people with chronic illness & disability may feel. It explains me perfectly.

Maybe many of you may use some of these or if not, give them a go. Anything to make life easier if worth a try. 

Obviously some will and will not relate to you depending on your condition but hope you can find something which you can identify with.

Joint Supports and Walking Aids
  • Bandages & Splints - As I sprain really easily I have bandages and splints for just about every joint. I don't wear them all everyday or i'd look like a mummy, but I keep them handy and wear them when any of my joints are feeling particularly weak saving me from spraining them further.
  • Support Belts - I have a Serola SI Support Belt which I wear religiously. As my hips are one of my most hypermobile of joints I wear it everyday to give me that extra support when walking around. I can notice the difference straight away if I ever leave the house without it. I basically feel weaker and get tired quicker than usual. My hips, legs and lower back ache a lot more when I don't have it on. They are one of the more expensive types of belts and there is no way that the NHS are going to hand anything this good out but they are well worth the money. Plus they are pretty slimline and dark in colour so no-one can notice that your wearing it, even under tight clothing.
  • Folding walking sticks - These are great, especially if your going out to a party and dressing up and don't want to carry around a full size stick. As they fit in your handbag you can also take it out with you even if your feeling OK just as a precautionary measure. You can get them as cheap as  £8 on Ebay and in a load of different colours and patterns. Mine is just a plain black one but i'm planning on 'blinging' it up :)
Home treatments
  • Heat pads and hot water bottles - If there is anything that I can say that definitely helps my joint and muscle pain it is heat. At the minute i'm going through endless supplies of heat pads throughout the day as I wear them under my clothes but they're not cheap. I would recommend buying a trusted old hot water bottle or the more modern microwavable heat wraps and packs for you to use when you're at home.
  • Jacuzzi Spa Bath Mat - These things are A M A Z I N G!!! Ours is pretty old so could do with updating to a newer model but if you can't afford to adapt your bathroom with a fully fitted jacuzzi bath then this is the next best option. I just wish I could sleep in it! I think its the only time my muscles feel fully relaxed. Maybe I should start looking for a job that requires me to sit in a hot jacuzzi all day, i'd never be off sick!
  • Epsom Salts  - Not to take orally but to use in the bath. These salts are also commonly known as magnesium sulfate. They work by the sulfates being absorbed through your skin, increasing the magnesium levels in the body which help relieve muscle pain and stress, improve circulation and apparently can improve your nerve function to! Another bonus is that it makes your skin feel nice and soft.
  • Tens Machine - Another must have for those chronic pain sufferers. Not exactly cheap but great for first thing in the morning when your legs wont stop spasming and the pain killers haven't yet kicked in. Not exactly a cure but a very good quick fix.
Things around the home

These are things that aren't necessarily aimed at people with disabilities or illness but I've found using them help save time, energy and those ever important spoons!

  • Long handled dustpan and brush - For the dreaded house hold chore, cleaning the floors. We could do without having to do chores but its obviously a must especially if you have small children who are constantly crawling around, they seem to pick up everything they're not supposed to! If your not lucky enough to be able to afford a cleaner or have a family member help out than this product is a must. If you have trouble with your back or any lower joints and you can't bend well or get down on the floor to clean than they are great. It means you can sweep the floors and pick up any dust/dirt without feeling like you're going to break your back.
  • Bar stools - If your like me and have trouble standing for long periods of time but don't want to spoil the look of your kitchen by having a ugly looking perching stool or seat which reminds you of an old people home on view, than why not get a bar stool to help you when your busy in the kitchen? At the minute I have a folding bar/kitchen stool which I will use when cooking or washing the dishes. You can pick these up relatively cheap at places such as Ikea. They're also ideal if you get lumbered with a huge pile of ironing! 
  • Buying pre-peeled veg - This tip makes cooking a Sunday Lunch so much easier. No standing for nearly an hour peeling loads of veg and cutting it all up ready to cook. It simply comes out of the freezer and straight into the oven saving you time standing around and if your like me, helps prevent spraining your wrists while chopping everything up.
  • Using the kettle - Instead of filling the kettle right to the brim I only put enough water in for what I need or what I can hold comfortably so I'm able to lift without spraining. This does mean that when filling the babies bottles it takes that bit longer but worth it to not cause any injury.
  • Dry shampoo - I've recently had my hair all cut off into a bob. I never thought about how much more time it takes to style shorter hair! My tip is to wash it less often and use dry shampoo. Or even easier just keep your hair long enough to tie back so you don't have to waste energy attempting to dry it and then style.
  • Travel hairdryer and straighteners - If you can't go a day without washing your hair than I suggest buying a travel hairdryer and if necessary, straighteners to. I've only just recently realised as my wrists are starting to get weaker just how heavy my full size hair dryer is and how much it actually takes it out of me trying to hold my arms up long enough to dry and straighten! I've resorted to using my travel hairdryer as its much lighter and easier to hold up.
  • Product size and weight - Buying products that aren't too heavy, such as shampoo & conditioners, milk and boxes of washing powder can really help. Don't buy large bulk items just because its cheaper. I've had to start thinking about will I be able to lift the product without hurting myself doing so. . 
  • Buying products that can be opened easily - There have been a few time when my partner has bought a carton on milk and not opened it for me before he's left for work and my hands have been too weak to get the top off resulting in no cup of tea or cereal before work. The ones with the foil caps are ideal, although obviously the glass bottles that they come in are heavier than the regular plastic. I also buy packets of powdered baby foods which are easy to open just in case I have trouble getting the jar lid off his regular food.

Things that will help which I haven't got round to buying yet!

  • Instant boiling water - Without having to fill and boil the kettle. You can get products such as the Tefal Quick Cup which has instant hot water at the press of a button so no need for heavy lifting!
  • Lever taps - We've just bought a new house and i'm really hoping that it already has lever taps installed instead of normal twist taps. Much easier to turn on with weak wrists.
  • Shampoo and Conditioner dispensers - To save on trying to squeeze the last bits out and lifting the heavy packaging. They will have to be stylish ones of course to fit in with my new bathroom.
  • A new bed or mattress - Or both! I've found an adjustable bed which also has a memory foam mattress but it's pretty expensive. I think the cheaper option of a memory foam mattress will have to do for now. Once we're in our new house anyway.
This is all I can think of for now but there are probably many that i've missed off so please feel free to comment with any spoon saving tips that you use.

As I mentioned i'm moving house soon. An actual 'HOUSE' not a ground floor flat like we're in now. I will obviously have to find more ways of adjusting and adapting to living over two floors instead of just the one especially when at the minute I try to avoid stairs as much as possible. I've been trying to think of ways of building a slide down the stairs so me and my baby can get downstairs on a morning but can't see that being very sensible! It would be fun for him but not very practical having a huge slide in your house!! Don't think the husband would agree with me either lol :) 

I will update my blog with a 'tips & tricks ii' post once I've had time to work out what helps and what doesn't.

Stacey xxx

Monday, 17 September 2012

My Miracle Week - An endless supply of spoons. Why couldn't it last?

Arriving at our amazing wedding venue

This post is just to remind those with chronic illnesses that 'sometimes' miracles can and do happen.

Back in July I got married. I was so worried that the stress of everything would make me ill on the day and i'd have no energy. I had been planning the day for 2 year. Everything had to be perfect. I didn't make it easy on myself though. I'm pretty creative. I like to make things and love anything to do with arts and crafts so decided to make all stationary, flowers, centrepeices and decorate the cake myself! 

Bridesmaids Flower
 Made with artificial flowers so my bridesmaids could have as a keepsake

My first ever attempt of cake decorating

Table Centrepiece and Table Name Card
(Our wedding was Newcastle United Themed - Everything Black & White)

Somehow I was completely fine. I mean really really good!

I didn't  wake up in chronic pain like usual, I was just a bit stiff. As soon as my medication kicked in ( I took extra just to be safe) I was up and ready to go.

I went off and had my hair and make up done, whilst downing some champagne, and then back to my mothers to get the dress on. The wedding cars and my dad were already there when i got back. I was definitely running late. Due to get married in 15 minutes and I was still in my pyjarmas but still had time for a pint of wine (there were no wine glasses left - i didn't drink a pint) and quick smoke. The photographer has pictures to prove it. Classy, I know!

By this time my meds and wine had well kicked in and so had the nerves!!

During the service my legs ached a bit but nothing too bad. I didn't really notice any pain until it came to our wedding breakfast when I look at the time and realised I had no bag, no tablets on me and I had missed my afternoon pills by 3 hours!! 

Cue sickness!!!

During and after the wedding breakfast I was constantly throwing up, dizzy and weak. Complete withdrawal. My mother went and got my pills from the car, I quickly took a load (extra again) and had a lie down.

Half an hour later I was back up on my feet and enjoying my day with family and friends.

Wedding party in the courtyard of Durham Castle
I have to say, from then on I don't remember being in any pain at all! Maybe I was on a high with it being our 'Big Day' or maybe it was just the amount of alcohol and medication consumed. Whatever it was, it was amazing! 

I had the best day I could have ever imagined. (Except for the dodgy hour during the reception but I can erase that bit)

I was expecting to not be in the best of shape the next morning but again I was surprised by how good I actually felt. We spent the morning walking along the river in Durham. The sun was out. It was just perfect. I even had a pair of wedges on and I was walking fine!! 

Surely this couldn't last right?

Well it did!!! For a whole week!!!

We went away for a mini honeymoon to Portugal. We stayed on a gorgeous golf course with private villa which had a roof top terrace and hot tub. It was so nice to be away and although I missed my baby boy a lot, I really enjoyed the break. 

We done so much in our time there and I never really felt too bad except in the mornings but I suspect that was more to do with drinking too much. I had an endless supply of spoons! On the last day I even managed to go to the driving range, something I never thought i'd be able to do again. I really did pay for it the next day, well the following week actually but I suppose after a week of being basically pain free I couldn't have expected any less.

I have no idea how I felt so good that week with so much going on.  Maybe it was just the endorphin's kicking in and that being in the sun and spending time in the hot tub that made me feel that way. The stress of the wedding had gone and I was just enjoying myself.  I just wish I was like that all of the time. I actually felt 'normal' for the first time in ages.

I hope it happens again soon!

If only.............

Monday, 3 September 2012

30 things you may not know about my Invisible Illness

September 10th - 16th is National Invisible Chronic Illness Week
There are many things that people can do to get involved including blogging for the cause, uploading pictures of their 'visible hope' and obviously tweeting and sharing links on facebook. Its purpose is to generate awareness about all types of Invisible Chronic Illness.
During this week, between the 10th and 14th, there will also be a virtual conference where anyone can take part. For more information you can visit the website.
The '30 Things Meme' has been created so that us bloggers can share information about our daily life with others. It's there to help us be more compassionate to all of those around who are suffering in ways you may not have noticed. From reading other bloggers meme's I've found I have a lot more in common with other sufferers even if our illnesses are not the same.
Here's my '30 Things Meme'
1. The illness I live with is: Hypermobility Syndrome/ Elhers-Danlos Syndrome - Type 3 - Hypermobility
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Having to say no, mostly to social engagements and learning what my limits are. (I'm still learning!)
5. Most people assume: That I'm fine or better because i'm out and about and I don't look sick.
6. The hardest part about mornings are: The muscle cramps and constant aches. Having to pull myself out of bed and get my (very heavy) 8 month old fed, ready and to childcare and then myself to work. It's agonising when you feel like your legs are on fire and both back and hips are about to break.
7. My favorite medical TV show is: I don't really watch medical TV show but if I had to choose I would pick Supersize Superskinny
8. A gadget I couldn't live without is: My phone. Being connected with loved ones, social media sites, online support groups and my blog is what keeps me going. Especially if i'm having a particular bad pain day and stuck in bed. Texting and even holding the phone up can sometimes be strenuous but I wouldn't be without it.
9. The hardest part about nights are: Nights can go either one of two ways. Sometimes I'm that drowsy from meds I don't wake up when my baby crys and my partner has to do the 'night shift'. My pills can also have the adverse effect and I can be wide awake and hyper getting little sleep making me worse pain wise the next day. 
10. Each day I take _27_ pills & vitamins
11. Regarding alternative treatments I: have tried: Physio (no better from it), Massage (hurt more afterwards), Acupuncture (was told it would last a week - it lasted 2 hours), seen a Chiropractor (took about 3 month before I felt a small difference and went back to 'normal' as soon as I stopped going) and  to an Osteopath (AMAZING! But only for 24 hours and far too expensive to see every other day.)
12. If I had to choose between an invisible illness or visible I would choose: I think most people would answer this question by saying visible but i'd rather have an invisible illness. I can see their reasons why they'd say visible as in ''people wouldn't question their illness or disability'' but I'd rather appear to other people to as an equal and as able as they are, even if on the inside i'm broken. I don't think that the worlds view on illness and disabilities are where they should be and that discrimination unfortunately still exists. I obviously don't agree with this but I feel that ignorance is still a factor that needs to be tackled.  
13. Regarding working and career: I studied Music from a young age and eventually went to university and graduated with a BA Hons in Contemporary and Popular Music. Throughout my time at college and uni I worked at an entertainment venue and undertook a number of roles which I loved. After I graduated I secured a job at another entertainment venue as a Duty Manager. I love working in events and have done so for the last 8 years but i'm finding it increasing hard to keep up with the physical aspects of my role. My GP and Specialist have suggested to either give up work until I'm coping a bit better (not an option) or to find alternative work which isn't as physical and is more desk based. My employers have currently made reasonable adjustments so that I am able to stay in employment until I feel I am up to taking up my full duties again. I'm currently looking for alternative employment. I know that I could walk into a call centre job, there are so many being advertised in my area at the moment, but I do not want to walk away from the industry that I love working in. Since changes have been made at work my attendance has been faultless so I know I am able to cope with full time hours, I just need more regularity rather than constant shift changes and late nights at work and maybe a job based in the co-ordination or planning events instead of the management.
14. People would be surprised to know: I can't remember the last day that I was completely pain free.
15. The hardest thing to accept about my new reality has been: That my son will be an only child. I had such a hard and painful pregnancy due to my condition that in the end I was housebound unless someone came and took me out and pushed me around in a wheelchair. It was the worst pain i'd experienced even labour seemed easy after the months of pain. I had always wanted two children but I would never put my body through that again, not to mention that i'd be at higher risk of miscarriage, rupture of membranes, hemorrhaging and passing the illness onto the child. I obviously did not know all of this before I had my son who luckily isn't showing any of the early signs of the illness.
16. Something I never thought I could do with my illness that I did was: To be honest I try my hand at anything even if it does wear me out. I try to do the same as I did before I was diagnosed. Just a lot a less frequently and probably a lot slower.
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: Going out on nights out with the girls and dancing all night.
19. It was really hard to have to give up: Wearing high heels. I have so many gorgeous shoes that I can no longer wear. I'm holding on to them just in case.
20. A new hobby I have taken up since my diagnosis is: Writing this blog.
21. If I could have one day of feeling normal again I would: Dance, ice skate, go for a run (not that i'd get far) and a nice long walk in the lakes.
22. My illness has taught me: Not to judge others. 
23. Want to know a secret? One thing people say that gets under my skin is: 'So are you better now?' (I cant remember the last day when I was 'better'! This condition does not go away!) 'But you don't look sick' (Ok then, what does 'sick' look like?) 'What have you done to your foot?' (because I'm limping does not mean I have hurt my foot) Its a fluctuating condition, just because I look like i''m walking better or have more colour than other days does not mean i'm better. I could go on :(
24. But I love it when people: actually listen and are generally interested.
25. My favorite motto, scripture, quote that gets me through tough times is: I've never had a moto. Cuddles from my baby boy are all I need to get me through :)
26. When someone is diagnosed I’d like to tell them: Join the support groups online (HMSA and facebook). There are loads of people going through the same struggles as you and are willing to give friendly advice. If you need to rant, vent or chat about any illness related stuff they're great for all of that. It's great being able to talk to people who are going through the same especially if you have no one around you who fully understands.
27. Something that has surprised me about living with an illness is: How much ignorance there is towards people who are sick, especially those who have an invisible illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Just being there for me. Helping with household chores, looking after my baby when I can't, cooking for me, asking if I'm alright and if there's anything he can do. My husband does all this, I can't thank him enough. 
29. I’m involved with Invisible Illness Week because: There needs to be more awareness about invisible illness. Just because someone doesn't look sick doesn't mean that they aren't and the majority of people don't understand that. The more blogs that are wrote for this cause the better.
30. The fact that you read this list makes me feel: Heard. 

Sunday, 12 August 2012

Chronic illness - It doesn't just affect the patient

I thought of writing this post a few weeks ago but I've had a pretty busy month and haven't had the energy to do so. Now that my wedding and honeymoon are over I can get back to my blog. I have so much to write about! :)

When you get diagnosed with a chronic illness you start to think how is it going to affect your life. I never once thought how it was going to affect anyone else. Pretty selfish really.

When you think about it properly it affects a lot of people around you. Your partner, your children, your family, friends and work colleagues. At this very minute, for me,  even the general public could be affected. (i'll get to that later in the post)

Here's a few examples of how my illness has affected the people closest to me:

My Husband: When i'm having a 'Bad' day he has to do a lot more than most parents would. He clothes, feeds, changes and carries our baby. He has to drive me around if i'm not up to it. He'll cook tea and wash up if I don't have the energy or i'm too dizzy to stand long enough to cook a meal. He gets annoyed and angry that he's having to do all the extra work while I lie around but he's annoyed and angry at me. He's like that because there is nothing that can be done to make me better and back to the way I used to be. Sometimes I don't wake up through the night when our baby cries because of the medication so he has to get up more than I do. I know he's exhausted. But I do appreciate it even though I may seem sometimes ungrateful, I'm not. Its just that i'm constantly tired that I always seem to be in a bad mood. I know I need to show my appreciation a bit more often.

My Baby: There have been days when he hasn't even been changed out of his pyjarmas and we've lay in bed all day. Just for the fact I'd had no energy to carry him or been to dizzy to stand up. On my good days I try to get out of the house as much as I can, even if its for a small walk so he gets a bit fresh air. I feel guilty that I can't carry him for longer than a minute without my back and hips giving in or that I can't go out everyday with him and play on the floor and throwing him about (he loves being held up ion the air) like his dad does. I suppose he doesn't know any different yet but when he grows up he'll realise there a lot of things that other peoples mothers can do that I can't. I just hope he understands. 

My Family: I'm forever asking for lifts and favours. ''Could you call in the shop after work and drop some milk in for me'' As I can't face walking 100 yards to the shop which would mean getting myself and the baby ready. It would take up a few spoons doing so. I've recently had to ask for my mother to come to mine on her lunch break and take Bobby to the childminders as i was too ill to look after myself never mind a baby. When my Husband starts working offshore later in the year i'm probably going to have to ask for even more help. Saying I've still never managed to bath him myself I think he'll be going along Grandmas for a wash :) 

My work colleagues: If you've read my previous posts you will know that I've been seen by Occupational Health at work and that changes to my role have been made in order for me to stay in employment. I've recently been told that they cannot stay in place permanently and that I could basically loose my job because of my condition making me incapable of 'some' duties. (But that's a whole different post - I promise to upload soon!)
Because of these changes being made for me (which has been my shifts have all been changed to days only) it has meant that one of my colleagues has been changed to all nights which is completely unfair. She to is a mother, of 3, and is spending 5 nights a week out of the house and not leaving work until after 11pm. Of course this is going to cause arguments and I know that I didn't ask to be ill but it doesn't stop me from feeling guilty. If I just left my position everything would go back to normal and she would have her family/work life balance back. 
Some of my duties have been offloaded onto other people, i.e deliveries. I must admit I haven't kept to this change in duties. I've still put cages full of stock away with asking for help. I hate asking for help. I'd rather just get on and do the job but I injure myself doing so. I know what my body is and isn't  capable of, I just tend to ignore it. I need to learn to stop being so proud. 

I'd like to round up by saying I know people with illness all suffer in someway or another but give a thought to those around you to. Living with Chronic illness can affect you not just physically, but emotionally, socially and for me if I loose my job i'll be affected financially. Obviously it is the patient that will have the physical affects but the emotional, social and financial can be felt by those close to you. 

Give them a thought once in while.

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