Getting Motivated

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Yesterday despite waking up after a fitful night, hips clicking and stomach churning I decided it was time to get on with kicking some butt!

I still hadn’t received my PIP claim form despite calling them nearly three weeks previously, plus the housing benefit form hadn’t made it’s way here, shock horror! and I hadn’t heard from any of the hospitals, doctors including Simplyhealth.

So with my headache at an 8/10 on the pain scale, I had already got myself prepped landline phone was by the bed, computer in the bedroom and our room is next to the office (with all the paperwork)  Andrew headed off to work and I thought it was time to deal with some incompetence.

First call, the DWP now in my original call you go through all the questions and towards the end of the call the handler gives you a number and explains if you haven’t heard received your forms in 2-3 weeks call back, as if your forms are not returned within 4 weeks your claim is cancelled.  That strikes the fear of god into me, so I took it really seriously, 2-3 weeks, today is 2 1/2 weeks exactly, so with no forms I am ringing.  I speak to a young lady who takes me through security, as usual, and I explain my predicament.  The concern I have that my forms haven’t arrived and my claim will be cancelled if I don’t get them back by the end of next week, to my horror she replies oh no they were sent out yesterday!  Yesterday!  What the hell,  I rang nearly three flaming weeks ago,  I will hasten to add I was calm on the phone the turmoil was all internal at this point, but purlease DWP what the hell does it take?  So it appears this PIP claim is going to be the slowest most long drawn out process ever, and I wish to god I could go back to work, NOW !! So the whole four week cancellation of claim thing might have been a load of rubbish it appears if they don’t send the form until three weeks after your original call!

Secondly, Housing Benefit, I mentioned recently that we had sent our forms back to the Job Centre/DWP back in early March and they got lost, and a couple of weeks ago I requested new ones and emails were being sent yadda yadda …. guess what same again.  Nothing.  Well yesterday’s second call was to the local housing authority, more security, more rubbish excuses of we definitely sent those out over two weeks ago!  Oh you haven’t had them?  Oh well send more!  See that wall over there I think I might go and just bang my head on it !! Well it’s not like my suffering can get worse is it?

Finally I decided to ring Simplyhealth to discuss my private health coverage, they have been amazing to date.  They have covered and spent an absolute fortune on trying to find out what is wrong with me.  Today I think was the end of the journey.  I called to tell them that I didn’t need to go and see Dr Lim as I would be going to see him via the NHS, it seemed silly trying to confuse the system seeing him privately as well as via the NHS so let’s keep it  as easy as possible.  So whilst on the phone I wanted to know when my last appointment with Dr Weatherall would expire, they had agreed to one last consultation.  The young lady then advised the medical report had been received 30th January so it was going to expire on 30th April so that was today, now, immediately. I was devastated.  My last chance to see Dr Weatherall had slipped back to the NHS drawing board.  I then tried to explain about the possible EDS diagnosis, she had never heard of it?  I had to spell it to her, I am sure she was googling as we spoke.  Anyway she said as it was all chronic they wouldn’t cover me so that was the end of the claim,  I really was gutted after all the good stuff it felt like a bit of a kick in the guts.  But she was only doing her job I suppose.

So suddenly the stress level didn’t help too much and I needed to rest a little, a few more painkillers were needed and a little weep.  Feeling miserable really sucks !! Following up with doctors and hospitals would have to wait another day I really had done enough for one day and it wasn’t even lunchtime!!

The Gallery – Happy

As I’m sure most of you can tell most of the time I’m not in a “happy” place so I look at lots of photos and try and use my imagination and memories to take make me smile from time to time.

The two most important people in my life, the ones who try and make me smile through all the tears. ❤️❤️

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Next would be my fur babies … When I am stuck in bed for hours on end they come and jump one me all very purry and playful 🙂

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Then I couldn’t go without mentioning a view which always makes me happy when I see it, every time we step onto the balcony in Florida and I see this exact sunrise, I smile … Because I know once I am here life is good, the sun is shining, there is no stress generally for a week or two and Andrew and I can be us, for me that is very important.

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There’s two last things that “made” me happy but I still smile when I look at photos. I will explain their significance. I have lost my Specialing since my PoTs diagnosis so when I look at photos it is often tinged with sadness but I am proud and happy to have served.

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Also I love my country music but I suffer with chronic phono phobia from the PoTs so although I occasionally go to concerts, this pic is at an Eric Church gig, it involves wearing earbuds so it deadens the sound (pointless). Both these photos were taken pre-PoTs 🙂 very happy times

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Sticky Fingers Photo Gallery

Why

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Every so often you type up your days posts and as you look back you think job done. Those nearest and dearest come home. The conversations have stopped though, this is where caring has started and marriage has finished. The days excitement for others is still bubbling around and the fear of what is just around the corner is biting. All this from my bed.

Depression is running deep and the worst part is we are well aware that medication can not be used as I am extremely intolerant to the ingredients within antidepressants.

Everyone’s lives are continuing whilst mines is static. I’m stuck here at home, generally most days in my room, pain levels off the scale, tachycardic, dizzy, immobile, the list is endless, whilst everyone else works, goes to the pub, cinema, has fun, enjoys life …. And I mourn the loss of my life.

Who stole it? Why me? I just don’t get it. I wasn’t a bad person if I was evil or a criminal I would say yep that’s why but I just don’t understand. So someone explain. Please?

So yet again I sit here in tears. Alone soul searching hoping one day some one will help me because I can’t do this anymore!

Desk Landscape

Having a desk to blog from would be a bit of a luxury I think I mean most of the time this is my view, because with a chronic illness (Postural Tachycardia) I spend 90% of my time here, so bed is the NEW desk 🙂 I can’t really give you a before or after picture but my view.

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But I will give you a view of my office desk and tell you what I would like to do to it so that if I won the competition it meant I could change it into a comfortable environment that I could sit in to blog.

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Ideally I would get rid of the old pine furniture we have had it for 15 years (and I hate it, but don’t tell hubby!!)  and change it for a desk in some nice light wood,  A comfy office chair with a couple of cushions, because my hips tend to cause me problems when I sit for too long in one position.  I would like pretty frames for our family pictures (these are very important to me) to montage around the office, because this room is for solely that use.  We are also going to make this room a memorabilia room for all stuff sport 🙂 As you can see from the picture there is a signed print from London 2012, we have more stored up from Grand Prix’s, the Olympics and other sporting events but just haven’t got around to sorting out the space to display it.  This would be the perfect opportunity.

Finally maybe a relaxing chair in an accent colour in the corner to co-ordinate the room together? and somewhere to sit and read when you just don’t want to work anymore!

That would be my perfect blogging space now if only I could get out of this bed!

Reflection

Having had nine months off now it has given me plenty of time to sit here and reflect on things that I have done as I have “grown up”. Sometimes looking back you think “what if” and you really shouldn’t I suppose, this story is about something I did as a huge act of generosity that may now come back and bite me on the bum and it is really troubling me!

Ehlers-Danlos Syndrome is a hereditary condition, the implications this will have on my children will probably be quite large and I do worry about this all the time.  I think about the children they will have in the future, my grandchildren, what kind of legacy have I passed onto them?  And this is all pre-diagnosis.

The issue I have is before I was sterilised I made a very generous offer to a couple to donate my eggs.  I went through a very vigorous IVF treatment which eventually resulted in 6 eggs being harvested at the John Radcliffe Hospital.  I know that sometime in 1994 twins were born from two of the eggs, a boy and girl, and as far as I am aware a further child was born I do not know the sex of that one.  Now I do not and never have considered these children as biologically mine, I donated the eggs they were surplus to my requirements.  However had I known in the early 90’s that I may have a hereditary disease I would not have been allowed to donate my eggs.  So what are the implications now if I find out I have EDS.

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Am I obliged to contact the JR in Oxford so they can seek out these parents and let them know once I have been diagnosed with the condition?  I am so worried and upset it keeps preying on my mind.  These ten year old children without a care in the world (hopefully) might end up with this really crappy news because the medical profession let me down, and I in turn let them down.  Will this all come back and haunt me?

Like I say I only did it to help someone else out, someone who really wanted to be a parent, and now I feel like not only am I struggling with this awful condition, but I am worrying about something I did ten years ago that I shouldn’t be!

Money and what to do when it starts running dry :(

Nobody tells you when you get sick what help you are entitled to.  What you need is an adviser who supports you at every step of the way and I am sure if you are well enough popping down to your local CAB or Job Centre isn’t a problem to get that advice, but when you are so sick and laid up in bed that isn’t always possible.

Initially I believed I was entitled to nothing, especially when the headache first came in 2011, I was working full time, paying taxes and NI so what sort of “assistance” or money saving could I get.

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First let me explain the Pre-payment prescription to you. In the first 3 months of my illness I paid approximately £300 in prescription charges, I used the same chemist to have my medications dispensed and not once was I advised there was a cheaper way.  One day I took to twitter saying I didn’t think I would be able to afford my next set of medication and someone asked why.  I explained and they sent me a link.  Instead of paying £7.65 as it was then per item, I would pay £104.00 annually.  The even better news is they don’t ask for this up front they take this by monthly direct debit over ten months, so you pay £10.40 per month, so basic maths if you are getting more than two items of medication per month this is going to save you money! I was gobsmacked and signed on the dotted line the same day,  it has saved me hundreds if not thousands of pounds.

Next up benefits, Employment Support Allowance, Personal Independence Payment, Mobility Scheme, most of these I hadn’t even heard of until recently but three weeks ago I was advised I wouldn’t be well enough to return to work, at the same time I also started looking into  benefits.  I already receive ESA because my Sick Pay has run out from my employer and at that point I called the Job Centre to discuss a PIP claim, apparently I could have been claiming this benefit for the last eight months, did anyone tell me? No of course not!  Can I back date it?  Definitely not!  Is it going to be easy to get?  Definitely not!  According to most of the research I have done the panels that the claimants sit are stressful and almost like interrogations at times.  They are currently dealt with by a company called ATOS although I am hoping by the time my claim is dealt with they might have gone (fingers crossed)  Lead time for claims, up to one year.  So this is something I am really not looking forward to 😦  But if I am entitled to something that I have paid into all my working life surely I need to fight for it?

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Then onto my current claim, two forms were sent to the job centre, one for the ESA and one for Housing/Council Tax Benefit, the date of this claim was 19th February.  So about two weeks ago I rang my local authority to ask how the claim was proceeding as we hadn’t heard anything and I had been receiving ESA since March.  A rather brusque lady at the end of the phone stated my form hadn’t been received via the Job Centre, she would send me another. When I asked if it would be back dated she immediately said no, I explained that my ESA started in February and the initial form was signed that date, she really didn’t care and just terminated the call.  I was just speechless so left it a day to decide what next, the following day I called the job centre and left them to look into the missing form, a few emails later with the promise that it would be sorted and guess what, we are no further forward, another task to do this week when I am feeling a bit brighter !!

I am sure it is all this stress that makes my condition worse !!

Just be aware if you are ill and well enough get to the CAB, if not get online or speak to someone who is already claiming some of these things, they can be a great help.

Here is the link for the application to buy the pre payment prescription : 
https://apps.nhsbsa.nhs.uk/ppcwebsales/

For all online benefits enquires look here : 
https://www.gov.uk/browse/benefits/entitlement

It’s The Weekend

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Well it is Saturday, but these days are just rolling one into another, I woke up this morning and was a bit confused, was it Friday or Saturday? Maybe it was the bank holiday that had thrown me out of sync, or the heavy use of pain killers this week, or just the constant sleeping. Whatever it was I woke up not really knowing what day of the week it was. It matters more to Andrew because today he works all day and then he has a gig all night, a hard day! So caring for a sick wife on top of working a 60+ hour week is a nightmare how he copes I don’t know?

The good news is the side effects from the new medications appear to have gone, so I am not feeling like a zombie, my jaw is not gritted all the time therefore I am hoping in time my head pain will diminish!

The bad news is my head pain is 10/10, I am really unsteady on my feet and now pretty much bed bound. I haven’t even managed to get downstairs since Wednesday.

Last night I managed to eat some boiled egg and soldiers 🙂 it was lovely. Andrew called it my feast, but it was what I really fancied and I enjoyed it so thats a positive.

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So this morning Andrew has got me up and washed as he claimed I was “festering” his words not mine, I did feel pretty rotten, and I feel a bit brighter in myself despite the pain. It’s amazing what a wash and clean PJ’s can do 🙂

Despite Andrew heading to work today for goodness knows how long I’m not to worried he has left me with my Complan drink for lunch (oh yum), a banana, all my medication, two telephones, one computer, one iPad, two tv remotes and the cats who keeps wondering in and out. I think i am sorted for now!

Fingers crossed this pain diminishes and I can get out of bed tomorrow!

Not Doing Too Well

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The last 24 hours have been horrific to say the least. This will be a very short update as I can’t focus for long.

I have hardly slept, not deep sleep, I have dozed a little on and off, and am completely exhausted. Pain level is off the scale and I don’t know what to do with myself. I haven’t eaten properly for two days as the new medication makes me extremely nauseous thankfully Andrew isn’t trying to force feed me. I am so unsure whether this is the headache, the PoTs, or side effects from the new medication.

So today is another curl up in a ball and hope the pain settles kind of day in the meantime I did try and call the surgery this morning but Dr M wasn’t in until Monday so will have to just wait until then to speak to him.

Sorry it’s all doom and gloom but that’s chronic illness for you!

Highs and Lows

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Yesterday I woke up at 5am, I tried so hard to go back to sleep but I was fighting the impossible, so by 6.30am I had given up grabbed my iPad and was catching up on the days news and reading everyone’s twitter feeds.

I try not to move as I don’t want to wake Andrew, I won’t get my pain pills too early, always thinking about rebound headaches and being nagged to death by every doctor in the system, so I lay and suffer. That’s how I live my life and it’s becoming unbearable. So two hours later Andrew woke up, first question did I need anything, yes please pills!!

I laid and waited for the edge to be taken off my pain, it never goes anymore, the level of pain relief I’m on is enough to tranquilize some people, if Andrew takes one cocodamol he’s spaced out for four hours and can barely speak, me well it doesn’t affect me and just takes a slight edge off my horrific pain. So I laid and waited and off Andrew went to work. Then I got my first message would I like a visitor, I was in bed but I thought it would do me good and this friend was a better medicine than any pain pill.

Two hours later and despite lots of pain the two of us had compared our “sick notes” had a giggle, cried and generally supported one another. This lady makes me feel a fraud she is fighting an amazing battle. I am proud to call her my friend! So thanks P for taking the time to come and see me yesterday.

Next up was L and little E I hadn’t seen either for ages, I was too knackered to make a cuppa so L had to make her own I think guests better get used to that! Again much of the same we chatted about how things were going, or weren’t and just to offload a little to someone not Andrew was nice. Thanks hun for coming x

By the time they went I was flaked on the sofa, half asleep my mobile rang I noticed a name I haven’t actually spoken to for ages, he asked if I was up to a visitor, he was round the corner. Oh go on then ;). Visitors were like buses! Don’t get any for ages then three all at the same time, but it was nice.

So M turned up, now we have been friends for over 20 years, we hadn’t seen one another for about 3 years so there was a bit of catch up to do. First thing he says as he walks through the door was “You look well” I knew he wanted a slap lol, we sat down and we talked a lot. By the time Andrew got home we were still talking, I think we caught up with most things, if not he will just have to not leave it so long next time!!! Hint hint (I know you are reading)

However my poor head and body are making me pay for it today, again I woke up at 5am this morning, I’ve also started the new horrible tablets that Dr Mason wanted me to try (not liking the side effects) but somehow managed to go back to sleep, then I finally woke up about 6.30 again so it was iPad time and lay still until Andrew wakes up. By then I was near tears. Pain level today is 9/10 I have resorted to tramadol it’s that bad … I hate tramadol. By the time Andrew was due to leave I was barely able to speak, zombiefied, those tablets! He popped home a couple of hours ago and I just said I’ve had enough this pain today is killing me, and on days like this it does, it kills another little piece of me. This isn’t just about the pots, the pain, the seizure, it’s about quality of life.

There isn’t any!!!