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!

"There's no such word as can't!" ...wanna bet?

It's taken me all afternoon to fill in (what I can) the ESA50 novel form and I could only complete about 20% of it the rest I have to wait to fill in when Jeanine comes over tomorrow.
I find all this form filling in more exhausting than physical activity half the time even when I try and be good to myself by typing my answers and printing them out so Jeanine can do the actual writing on the form for me. My back aches, my fingers ache from typing, I swap from the desktop to the laptop to try and keep the pain down and it mentally drains me because you spend the whole time fighting your built in coping mechanism.
The coping mechanism is the brave face, the 'don't worry about me!' facade, 'yeah, I'm tired but I'm ok' answers, the 'I do it because I have no choice' answers when in reality I haven't eaten or drank all day due to sheer exhaustion or haven't washed my hair for over a week because I didn't have someone to help me and to be perfectly blunt, I look a mess and I stink.
I just can't be that person that says 'I cant do this, this and this' because if I keep saying that I'll stop trying. But you can't be that way when filling out the benefit forms because if you put on your facade and your brave face then they presume you can do all these wonderful and physical things and you get no help.So down comes the facade and the brave face and you're painfully reminded of what exactly you can't do. The list gets longer and longer as you go through the form and the 'Can't's' woefully outnumber the 'Can's' by 20 to 1. Food for thought? More like a whole menu and the dessert list on top, and don't forget the complimentary mint with the bill too...

Weekend update

I had a lovely weekend, got out of the house and enjoyed some sunshine!
We went off to see Alice which was great, I really enjoyed it and then we went for a meal at the Brewers Fayre afterwards which was delicious!
It did wipe me out though and I spent the rest of the Saturday dozing on and off on the sofa all evening, I think I spent more of it asleep than awake.
Putting the clocks forward has messed me up a bit too and I've found myself waking up even earlier than normal.
Sunday was nice too, we went to Nathans town and stopped in a couple of places to have a drink and enjoy the glorious weather we got, it was lovely and sunny and warm enough not to wear a jacket which was great, it really did brighten me up and Charlotte got her first experience of skittles!

The nice weekend has filled me with motivation and today I have been printing and making up lists so I have something to do each day health permitting. I've written a weekly and monthly housework planner and got all my ESA/DLA paperwork back in order as I'd been slacking in that department.

I really wasn't keen on roping Charlotte into the housework but the bottom line is, she needs to. She won't be doing everything, I don't think that's fair at all, but she has agreed to help me with some things and take care of her own bedroom. Nathan does most of it for me and it's so unfair, he works full time as it is and the last thing I want is for him to walk in and start dancing with the hoover, his evenings should be rest time, not doing someone elses housework.
He genuinely doesn't mind and his happy to do it for me, I think it's a way he feels he knows he can help as there is nothing he can do about my pain and fatigue but I mind, I don't like the idea of him doing it.
I'm at the stage now where I know if it will tire me out too much I won't do it, rather than do it anyway and regret it later but I'm filled with frustration that I can't do more than I currently can.
I'll pay Charlotte for her help once my ESA is sorted out and/or my DLA, whichever is first, at the whopping £31 a week I'm currently receiving I can't,.but I have promised to buy her a game for the Wii when it comes out on the 23rd of April.

This week I intend to rest as much as possible as me, Nathan and my best friend June are off to the coast on Saturday. I'll go if it kills me, as much as I love my town I'm yearning to get out, to feel some freedom, to see some new scenery. I don't care if it's cold, I don't care if it's raining, I don't care if I spend the rest of the week in bed because of it, I'm bloody going!!

On the completely un-organised side of thing I've been forgetting to take my amitriptyline. I haven't taken it for 3 nights now which I have no excuses for as I have my pill reminder case right infront of me all the time. I think it's the whole '2 hours before bed' thing that's throwing me, I don't sleep at a set time, I sleep when I feel the need to, and I don't know 2 hours in advance when that will be! So this week I'm trying to be organised with it and take it at a set time roughly 2 hours before my average bedtime and if its 3 hours beforehand or only an hour, sod it, it'll do. Taking the tablet at a rough time is better than not taking it at all.

I still haven't had my form through from the council for my blue badge, it seems that the chap I spoke to has forgotten me so now I'm in limbo again of trying to decide whether to apply now and go through the checks and medical or just wait for my DLA decision and hope I get High Rate Mobility (yeahhhhhhhhhhhhh right)

I managed to get hold of Jeanine about my ESA medical form and she was her usual aloof  'I really haven't got time for this' self and I barely managed to finish a sentence and got told off for trying to be detailed as possible and telling her something 'completely irrelevant', I just hope she's in a better mood when she comes to help me on April 9th, she seemed a completely different person when she helped me with my DLA form.

Could be crunch time soon

Yesterday was a day of all sorts. It was one thing one minute, another the next and I was getting so muddled and confused.
I got a phonecall back from the job centre yesterday about 30 mins after I'd put the phone down to them.
It turns out my ESA was declined not based on my income like the letter said but because they thought they didn't receive my SSP1 form to prove my SSP had finished so they declined it based on the fact I had no proof of what I was saying. I explained to the chap on the phone that they did indeed have it because I sent it special delivery, recorded and checked the tracking number and it had been signed for. Lo and behold less than 10 minutes later he rang back and they'd found tit, funny that!
So ESA is now in place, I'm being paid £90 in arrears straight away and then a whopping (wait for it.......) £30.61 a week. I'm  filthy rich now and I've booked a test drive with a Lamborghini Murciélago!!!*

WTC came up with the goods and I got my award notice so I can now show the council my income.

Included in my bumper post was a letter from the DWP about my DLA claim:

We are sorry that we cannot give you a decision on the new claim for Disability Living Allowance yet. This is because we have requested a report from your GP.

From stories I have heard and read it seems once the GP report is back a decision comes back pretty swiftly so crunch time may be imminent. I'm not holding out much hope for the outcome I want.
My GP is amazing, but I don't know what he's like when writing letters. I don't know if he'll be descriptive and explain my mobility and care needs or just say 'yep, I can confirm she has CFS' which is about as much use as a knotted kipper.
I'm presuming I can ask for a copy of the letter as it's about me but I'm really not sure on that. I'll need to go and see him soon to sort out this amitriptilyne as the Rheumatologist didn't give me the tablets just gave me a letter to drop into the GP surgery which Nathan did for me after the appointment at the hospital.
Typically Jeanine is on annual leave till next week so a bit in limbo as she made it VERY clear I'm not to fill in any forms without her and I have to do the medical one for ESA so they can decide what group I go in to.

I rang up the council yesterday and asked for an application form for a blue badge. I would get one automatically if I get awarded high rate mobility but I'm not expecting to get that and if I have to go to the appeal system it could be months so I'm going to apply for one now and ask Dr Sam to back me up and have any medicals they want. I could have saved myself a HELL of a lot of walking at the hospital if I could have parked in a disabled space.

Health wise I'm doing a bit better today, quite perky and the pain is a little bit calmer today, I'm still having the backlash from the ridiculous walk to the department at my hospital appointment.


*Here endeth the sarcasm.

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.

Almost got my relaxing day!

....but I didn't have any food in the house to Nathan took me to Asda this morning. Straight in and straight out as I was exhausted. Although I rely on my crutches to be mobile they tire my arms out so they still aren't a solution.

Had to take a nap this afternoon aswell, I try not to sleep in the day but today I just needed it, payback time for yesterday.

Still waiting on my DLA forms to come through, I got my ESA forms on Saturday morning but I need to ring work as they want my sick note as evidence and won't accept copies. I'm hoping tomorrow I'm well enough to start my DLA draft to get the ball rolling too.
Tuesday I have my blood test which is a fasting one so no food and only water from 9pm Monday night. Wednesday I have a chap from the council coming round to go through my finances as I should qualify for more LHA and Council Tax benefit and Thursday I have my appointment at the hospital with the Rheumatologist.
Busy week, not one I'm looking forward to.

I'm still trying to come to terms with all this benefit stuff, I've always worked so I'm riddled with guilt about it at the moment and feel like people will be judging me a sponger, trust me, I'd be working if I could.

Glasses are going ok, still trying to get used to them and managed to hit them twice today when I go to rub my eyes and I forget they're there, but I've had my first headache free day for weeks!

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.