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.

Weird Day

I can't explain how I feel, I'm all out of sorts. I'm exhausted but not in the usual way. I'm starving but too tired to cook, the spring cleaning bug has hit me and again, I'm too tired to do anything about it.
I haven't got the heavy feeling I usually have when I'm tired, motivation is an all time zero but my body feels ok, no heaviness, the pain is minimal but I still can't get myself going. If my body usually felt like this I would class it as a better day but I'm just as bad as I am on a no spoons day but with a different feeling.

I don't know if it's the amitriptyline, I wouldn't have thought it would affect me so soon but nothing else seems to explain it.
I've been snoozing on and off all day. Usually if I'm sleepy I'll settle down to an hour or two and then I'm ok again but today I have been half asleep and half awake all day but not feeling any gain from the naps.

Just a really, odd, unknown feeling and I'm not comfortable with it at all, it's almost like I'm not within my body?

Sorry for the babble, just want to get it written down while it's fresh in mind and feeling.

Good weekend coming up

Amitriptyline Day 2: Took a while to drop off, and was wide awake around 4.50am, which in todays case was fabulous because I wanted to be up for the Australian GP Practice at 5.30am, but on any other day I wouldn't have been amused as it will probably mean an afternoon nap which naffs up my sleep pattern completely.
On the good side I have woken up quite alert unlike yesterday.

I was too ill to go with Charlotte back to the hospital yesterday which I was incredibly annoyed and frustrated with. It's situations like this that really, really get me down about this awful disorder I have. I try to keep as positive as possible but when it robs me of being with my daughter in an incredibly important time I just want to explode with rage and fury.
I didn't miss much, it was just a case of them removing the ECG and that was it, no results from it as yet, but I should have been with her. Thank heavens for Nathan, I couldn't cope without him.

On a brighter note I am happier this morning as I seem to have mostly recovered from the hospital trip and if this carries on I'll feel ok to go to the cinema tomorrow to see Alice. And ofcourse I have the Australian GP to look forward to!!! One thing I haven't really talked about too much - my big geekdom hobby which is the F1 season. I am obsessive about it and I'm a die hard McLaren fan!
P1 was at 1.30am and P2 was at 5.30am so I made the horrible choice of missing P1 in favour of grabbing P2 so I got some sleep. P3 is at 3am tonight and I'm currently deciding whether to go back to sleep once Charlotte is off to school so I can stay up later, or go to bed really early and get up for 3am to catch it and then qualifying at 6am, I'll be glad when the season heads back to Europe!

Amitriptyline

Not impressed so far, not at all.

I have woken up feeling the worst I've felt for a very long time.
I feel so sluggish, I ache more than usual and can barely move and I don't feel any refreshment from my sleep at all, I feel just as exhausted and wiped out as I did when I went to sleep. I usually feel somewhat alert in the mornings even though I rarely feel refreshed from my sleeps but it's never been this bad. I literally feel like I didn't sleep a wink last night when I know I was spark out within 10 minutes.

I can't solely blame the amitriptyline, yesterdays Krypton Factor adventure could also be a factor but good grief it's taken me all the morning to peel myself off the sofa to write this entry so it's recorded as my mind is slowly turning to goo lately.

That pill reminder thingy I ordered from ebay came yesterday so that should be a big help as I was getting very forgetful with just 1 tablet a day and now I have to take 2.

This is all I'm going to write for now, I just wanted to record the morning after amitriptyline.

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.

CFS says no

I caved yesterday and did go for a sleep. Got a (disturbed) couple of hours which did help and I still managed to sleep reasonably well last night. Woke up at 5am but managed to snooze until 7 when I'd had enough and got up.

A couple of people sent me links to something called The Spoon Theory on a website called butyoudontlooksick.com. It's a VERY good way of trying to explain a chronic illness like ME/CFS. Please do read it HERE.
Typically today has turned out to be a 'no spoons' day. I've woken up feeling crap. The chances of me getting out or doing anything today are a big fat zero, damn and buggeration. Not that the weather is up to much anyway I suppose.
 I'm not sure if it's just the ME/CFS or something else brewing. My ears are aching and even more so when I swallow, but my glands often swell thanks to the ME/CFS so I don't know if it's related or I'm coming down with yet another viral infection, the culprit Dr Sam and I think eventually caused my ME/CFS because I was getting so so many and never able to recover properly from one before another hit.

Let's hope by resting today I might be able to gather a couple of spoons for tomorrow!

Must.Stay.Awake

Dammit, I'm flagging.

Edging closer and closer to going for an afternoon sleep but I know it's gonna bugger things up later and I'll be wide awake at 3am.
But ohhhh boy do I want to sleep.

I thought I was doing well today, managed to get dressed which was inspired by taking delivery of my McLaren team t-shirt but I think that's probably been the cause of my deflation this afternoon. As stupid as it sounds (see yesterdays rant)getting dressed utterly exhausts me.

I'm hoping I'm somewhat better tomorrow so I can get out of the house a bit with Nathan, even if it's just to the local for a couple of pints. Cabin fever is kicking in again since I escaped these 4 walls to go to the hospital.

Those leg jerks I've been having have travelled up my body today, I sort of twist at the hips all of a sudden now too, it's really bizarre!
I'll be a pro body popper in a few weeks at this rate..

Yooo Hoooo?

I think I've turned invisible you know.

Not including my mum and brother, I have Nathan, and my best friend June.
I have 782 texts in my mobile inbox because I never get round to deleting them, over 700 of those 782 are from Nathan, my received calls list consists of June and Charlottes school.

I know this reads as a WOE IS ME post and an I WANT ATTENTION NOW!! post, but it's not that, it's just another symptom of the ME/CFS thats invisible. The loss of friends, work and a social life, a part of this god awful disorder that no-one even thinks about.

I feel so cut off and isolated being stuck in the house and 100% reliant on Nathan if I'm up to going out but even more so when you suddenly realise it's been weeks or more since you heard from people you miss.

I don't know what bought this to the forefront for me today, most likely the incredibly patronising and aloof tone of the woman from the council today when I said I couldn't make it to the office to bring in some paperwork, I said I couldn't make it because I have ME, not because I couldn't be arsed. I WOULD come to your lovely office if I could, I would hop, skip and dance and relish in the sunlight and fresh air that this time of year brings if I could. But I can't, and DON'T sodding patronise me because I'm ILL, not LAZY.

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.

Forgetfulness is my middle name!

One thing I forgot to mention yesterday was having a fall on Sunday morning in the kitchen.

My legs have got really bad and they have started jerking quite badly. It's like when the doctor hits you with the little rubber hammer on your knee and you kick out. That happened as I was stood in the kitchen and caught me totally off-guard and down I went on to some lovely cold hard tiles. Nice.
I don't seem to have had any bad repercussions from it, no bruising although I did ache for a while after but that seems to have passed.

I just wanted to record it here for my records as my memory is shockingly bad now. I forgot to take my meds all the time so I think I'm going to get one of those weekday pill pot things and leave it on my desk so I can see it clearly and remind myself. My Rheumotolagist said it was important to take the fluoxetine in the morning and I'm supposed to take the amitriptilyne 2 hours before bed.

The benefits thing is still a farce. I just tried to re-apply for ESA now my WTC has finished but they haven't closed down my last claim so now I have to wait for them to do that before I can reapply.
I spoke to my local council about applying for council tax benefit and adjusting my LHA but they want proof my SSP has ended and the ESA people never sent it back to me so I'm chasing that down too. It's just one big sodding vicious circle, I can't do one without the other and can't do the other without one. ARGH

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!