An eventful week

This week is proving to be quite eventful.

It was my birthday on Tuesday which was lovely, Nathan took me down the local pub for a couple of drinks to get me out in the lovely weather we had that day and my best friend June joined us when she had finished work. Nathan got me an amazing bag which is so different and June got me a beautiful shirt from Next and some lovely flowers which are currently filling my room with the most gorgeous smell!
Wednesday was the day I got my DLA decision after waiting 2 months. As much I was expecting the result I think it angered me even more because they haven't even given me a medical. Needless to say I'm appealing and will take it as far as I can go. I also had to go with Charlotte to the hospital as she was called for another 24hr ECG to see how her heart is doing.
Thursday was my first 'pathways to work' meeting at the job centre. The advisor Mick was a lovely chap who explained everything to me and was genuinely shocked about my DLA decision and thought it was ridiculous I was even there as he could see how much I was struggling.  He gave me a bit more insight into the benefit itself, what I can and can't do and I learnt a few things which was good. He was really supportive and even arranged for me to have my travel expenses paid so I was given £5.25 for petrol in cash on the spot which was really nice!  I was also back at the hospital so they could take off Charlottes ECG machine and download the results.
Today I'm off to my mums later if I feel ok to collect my birthday goodies from her and my brother, I'm trying to conserve as much energy as I can as I've had such a busy week and I really want to see my mum, so today will be spent doing as little as possible so hopefully I'm ok to go this evening.
Sunday is another big day, my ESA medical, something I'm dreading and something I'm expecting to appeal like my DLA decision, I'm mostly expecting them to give me a big fat zero on my points so they'll say I'm fit for work. Time will tell.
The good thing about ESA is that they are actually on schedule with me, which considering the stories I read on a daily basis is a rare thing. I'm supposed to have my medical and the result within the first 13 weeks of claiming. I'm now in week 6 so it's going ok. I've read some people being on ESA for 6 months and no sign of a medical so I'm counting myself quite lucky because once the medical is done and the results are back, if I'm (like I should be) placed in either the care group (NO chance) or the working group (most likely) it'll be a raise of about £20 a week in my pocket which I shan't complain about. Before your medical you are on the 'assessment rate' of ESA which is pittance.
My medical is in Northampton which is about a 30-40 minute drive away so I'll be knackered before I even get there, but I was told you can claim petrol money back for going so I'll be making sure I do that!

I also got my letter through from Physiotherapy, there is now space for me so I need to call them to make an appointment. I'm really not sure how it will help me, but I'm not a doctor so I'll go and see how things are.

Please cross your fingers for me on Sunday!

I hate hospitals!

Today was a rare excursion out of the house, back to the hospital but this time for Charlotte.
She was diagnosed with a heart murmur a couple of weeks back and today was finally her 'urgent' appointment to the hospital.
I didn't like her doctor at all, but we got through the appointment. He didn't hear the murmur but he said they can come and go so now Charlotte is currently sat on the sofa hooked up to a portable ECG machine that is recording her heart rate over the next 24 hours.
Typically the ECG department was what felt like miles away from the paediatric department and then once that was all fitted off we went to the pathology department because she needed blood tests too.
Outpatients was heaving and trying to get past people on my crutches was a nightmare and it seems you become invisible too, I had people trying to squeeze by me and kicking my crutches, people just suddenly turning in front of me and making me suddenly stop so my crutches don't go into their heels, it was ridiculous!

So now after my trip to the Krypton Factor obstacle course, better known as Kettering General Hospital I'm now sat here with the backlash. Legs are in extreme pain and jerking all over the place, a headache of doom and I feel like I've run more marathons than Eddie Izzard and tomorrow I have to do it again as we need to go back to the ECG department to give back Charlotte's monitor. Joy upon joy!

Luckily my gland/ear thing seemed short lived and those have both gone now so I'm feeling slightly more human.

I got letter from the hospital about physiotherapy and I have been told there is a 7 week waiting list so that's on hold for the time being.

Today is day 1 of my Amitriptyline. I've been prescribed 10mg and have to take it 2 hours before bed. I'm yawning my head off and my eyelashes are aching so I took it at 20 past 8 but I'm not sure I'm going to make the 2 hours before I fall asleep!
I've not really had the energy to Google it tonight but I'm going to look more into Amitriptyline tomorrow and it's use with ME/CFS. From what I have previously read it's prescribed for better sleep and pain, both things which I'm having trouble with, especially the pain.
So many friends told me tramadol is supersonic and does the job really well, it wouldn't even take a headache away for me but ME/CFS sufferers do seem to have an intolerance to normal pain relief which is why Amitriptyline is used in small doses so maybe (hopefully!) this will work for the pain because it's draining so badly on top of the extreme fatigue I already have. Codeine seems to work for me in some cases, but it unsettles my tummy so I try to take it only when I really really need to.

I'm looking forward to the weekend, I have booked tickets to see Alice in Wonderland 3D for me, Nathan, Charlotte and Nathans eldest daughter Beth. As silly as it sounds the cinema is quite cathartic for me. I get out of the house without having to walk far, get to sit down so not to tire me out too much and get whisked off to a fantasy world for a couple of hours which heals the cabin fever quite nicely and refreshes me. Sitting for so long does make me begin to ache but the film is quite a distraction and I top myself up on painkillers before the film and I seem to be ok. If I'm having a no spoons day I won't go because even sitting in the same position will about kill me, so I'm hoping I haven't jinxed things by booking the tickets today and I'll be able to go.

Still alive!

I'm so poo at updating this aren't I?

Hopefully updating will be slightly easier now as I just got a wireless keyboard and mouse so when I ache I can move it about and still carry on typing.

A few things to update on, I'll try to be brief so this post isn't massive.

I was denied ESA on the grounds that I was too rich and hadn't contributed enough NI.
That estimation included Working Tax Credit which has now ended as SSP has finished so I have to re-apply again but WTC are being slow with my award notice and I have no idea how much I will be getting from Child Tax Credits and as ESA is means tested I can't apply until I know. I've made to calls to WTC to be told it's in the post and has been since the 5th of March. I rang them again tonight and got really snotty. I don't like doing that because as a rule tax credits have always been good and reliable but with no SSP and no ESA and no WTC I'm starting to panic and I NEED this award notice so my housing benefit can be updated and I can apply for council tax benefit.
My DLA form when off on time but I've yet to hear anything, but I didn't send it until Feb 22nd so no surprises there, I'm not expecting to hear from them for another couple of months or more.
My Rheumatolagist appointment finally happened today after I had to keep cancelling because I've been so unwell (also why I haven't been blogging as much as I'd like to).
He's writing to Dr Sam to put me on Amitriptilyne on a low does to help with sleep and fatigue. He said it works very well with the fluoxetine I'm already taking and if I can get a good (ha!) nights sleep that will in turn help my fatigue, mood and energy levels. He said they can be used as an anti-depressant which I knew about as my mum has been on them for years but in my case they will be used purely for my fatigue and pain, he stressed they aren't sleeping tablets.
The appointment itself was an ordeal, the Rheumatology department was all the way at the back of the hospital and I had to keep stopping to rest and I was in agony and utterly exhausted.
As per usual when I start explaining my symptoms the tears came flowing and I got myself in a right state out of frustration, shame and I was absolutely drained from the walk to the department, it's the furthest I've walked for months.
He's also recommending a course of physiotherapy and the hospital will be writing to me with an appointment in due course. I'm really worried about physiotherapy, I'm worried it's going to make me worse but time will tell on that.

Another worry has appeared on my ever expanding plate. My daughter has been diagnosed with a heart murmur. We don't know why yet, anaemia was a possible cause as she has had it before but her bloods came back normal so she has an appointment with the paediatric cardiologist next week. Charlotte is having episodes of palpitations where her heart suddenly starts beating really fast and hard which makes her go all light headed and dizzy so it's a big concern. She was 'urgently' referred to the hospital, I'm not sure 3 weeks is urgent, but it was the earliest they had, next week can't come soon enough, she and I are both worried about it.

Health wise I'm not so good. Even with Nathan with me I'm staying in because of the sheer effort to get dressed and get out. My pain managment is still not great. I was given codeine to try instead of the tramadol and told I could take the tramadol with it if needed which I've had to do quite a lot and boy oh boy it makes me quite trippy and spaced out.

In other life stuff, on a personal level things are fantastic, I honestly think I would be a gibbering wreck without Nathan, he has been absolutely AMAZING. I crashed only 2 months after meeting him and most blokes would have ran a mile but he is so supportive and comforting and my rock. We're planning on moving in together this year!

Been a while..

Some of you may have noticed I've not been updating or about on Facebook and Twiter.

Health took a big dive so the desktop has had a wide berth over the past week or so, I'm writing this from my laptop rather than my desktop where I am firmly plumped on the sofa.

I'm now having chronic neck and back pain and my reactions have slowed down. Tramadol still isn't helping either so I'm currently trying to rummage up the energy to go and see Dr Sam again to try some different pain relief.

In better news I had a visit on Monday from the Welfare Advice lady, Jeanine. She was very nice and helpful and flew through my form for me. I got a letter from her this morning as a confirmation and she has written

Given the information you have put on the form I feel you may qualify for high rate mobilty, although they are getting very tough on awarding this level and low or middle rate care. Again, they have tightened up a lot lately on this component. Once you hear about the decision we can talk further  if needed about appeals etc.

So, I've been warned, as I already knew that this is going to be a tough road and I'm fully expecting to have to appeal at tribunal to get what I feel I am entitled to, but the fact that Jeanine thinks I should qualify is a comforting thought atleast.
Jeanine has also recommended I get Dr Sam to fill in part of my DLA form so I called the surgery today and asked if a charge would be applicable and they said it depends on how much he has to fill in (the more the better as far as I'm concerned!) so I'm going to put a covering letter in with the forms as it's really important he explains HOW my ME/CFS affects me, not just the fact I've got it.
The benefits and work website have a downloadable check sheet where you can fill in how each thing affects you like walking, washing, bathing etc so I'll fill one of those in and pop in it with the form. I've already given him one when I last saw him and he gave me the fluoxetine and the tramadol but some things have worsened so I'll do a more up-to-date one.

Speaking of the Fluoxetine, things are going well with that. I have noticed a difference when I wake up in the morning, I'm far from 'wooo hooo, another day!' but I'm most definitely not 'Oh shit, here we go again' like I was before I started taking them. It's hard to describe really. I'm more...accepting? at the moment. Which is a good thing, but it did bring me crashing down again when I was with Jeanine as all I had to think about was what I couldn't do, which is a lot, when I was filling in the forms with her and the tears flowed quite freely, but Jeanine was armed with tissues and words of encouragment so I feel ok again now but it was really upsetting and emotonally and physically drained me for a few days afterwards and it took me those few days to recover but I'm still not quite up to speed.
Jeanine also offered to help me with all my ESA stuff too when it gets to the point when they decide if I go in the work related group (ha!) or the support group. She has strictly told me NOT to fill in any forms without speaking to her first so I shall gladly follow orders.

Work are being a pain in the arse and not sending me payslips so I've had to ring them ah-gain to ask for them. It's like I can feel her rolling her eyes as soon as I say my name but if they'd send them in the first place I wouldn't have to call, would I? I can't claim ESA without them so I'll hound them as much as possible whether they like it or not, I got paid 3 weeks ago from work, I should have had my wageslip.


And this is enough for my hands to handle, they are aching so I shall end this gigantic post here and try and update daily again to save my hands.

Oh, one more thing. I couldn't make my rheumatologist appointment due to ill health so it's been rescheduled to the 17th of Feb.

A bit more helpful!

Jeanine from the Welfare Advice rang me today and seemed more talkative and we've arranged for her to come to me on a home visit on Febuary 1st.
In the mean time I need to fill in the generics of the form like my name, address, bank details etc and write down other stuff as it happens. How long it takes me to get dressed, get out of bed, etc etc so I'll be making notes from now on and saving them to the laptop in a word file.

I didn't make my Rhuematology appointment this morning thanks to being shown last nights dinner again in the loo. I feel ok now, tummy seems fine, I've eaten a light lunch and dinner and kept it down, so I have no idea what it was, whether it's the fluoxetine kicking in or not I don't know.
I also saw on my appointment letter after I'd cancelled that I need to bring a urine sample with me too and I don't have a bottle so I need to get one from the GP office, lovely.

That's about it really, nothing major apart from the throwing up this morning, dead leg is still with me, still stuck indoors, still staying in my PJ's all day.

My head hurts.

Well a lot more happened today than I was prepared for!

As I promised myself I called the DWP to get my DLA forms sent to me.
Then I got a bit of a bumper post which had my SSP1 form in from work and a choose and book form for my Rheumatology appointment at the hospital.

I called the number on my SSP1 form and it turns out you apply for benefits over the phone. 55 minutes later I was finally done! The chap was really friendly and helpful, and it turns out his wife has ME/CFS too so he gave me lots of advice and tips for filling in my DLA forms.

My Rheumatology appointment is at the hospital on the 21st.

One thing I forgot to mention was an eye test on Saturday. I've had a permanent headache now for weeks. Headaches are a common factor of ME/CFS but I might aswell get an eye test as they are free to rule it out. Glasses will be another expense I could really do without though at the minute!

I'm just exhausted now. My head is pounding and even though I was just sat on the phone for an hour it feels like I've been jogging on the spot for an hour instead but I'm glad it's all done and dusted for now and the ball is rolling so I shouldn't go without any income as the ESA people know when my SSP ends.

I'm going to have some soup for lunch and then crash out and have a sleep on the sofa I think, still in my PJ's.