Dr on the warpath

I love my Doctor! 

I spoke to her on Tuesday and she got very annoyed and angry that I’ve still not seen the neurologist again as I was supposed to this month. That his letter to her dismissing my diagnosis’s and health and the meds and care I’ve been given was as dismissive as when he spoke to me. 

That my tests proved I’m half blind in my left eye yet he’s not seen me again as he should’ve done this month. 

She’s writing to the hosp asking for the next available appointment for me and tests and not specifically with him. 

The sad news that’s she’s leaving was a shock to me, as she’s been so good to me and brilliant at sorting appointments meds care for me. We chatted a bit about why she’s leaving and she’s not happy about it but has to due to personal reasons. I’m really going to miss her, not just as my dr but the friendship we’ve built up and nattering about non health problems . 

She’s promised to hand me over to another dr in the surgery who has some experience with chronic illness and also to talk to her about my history, current issues and that I need special care and home visits. Also that they will need to chase up ignorant ‘specialists!’ :,) 

I’m feeling happier that something is going to be done about my ongoing neuro and eye problems. My dr is asking for an MRI, CAT scan, brain probes and spinal scan. Hopefully this will give me some much needed answers! 

Plus, once these tests and results are done I can be seen at Bath hospital for pain and rheumatic diseases as an out patient not an in patient as was first arranged. She’s arranged it for me and I am incredibly greatful for this. 

So fingers crossed the next couple of months will be full of answers and the right care! 🙂 

Pain and achievement

I was laid in bed yesterday trying to think about anything but the pain I was in, but then as is often the case all I could think about was pain.

My pain levels are through the roof at the moment, and for the first time in a long time looked on the interweb for any foods I could introduce or new or long standing pain killers I could suggest to my doctor.
Unfortunately I found nothing new, and although I have had many people suggest medical marijuana it’s not legal in this country, only in spray form for cancer and ms sufferers.

Would I take a marijuana tablet if I could? The truthful answer is, I would try anything that would lessen the 24/7 pain I am in.

What a lot of people don’t realise is constant pain is absolutely exhausting. It literally takes away your energy, your movement and causes palpitations. The smallest tasks, such as making a cup of tea can lead to shaking limbs, exhaustion, breathlessness and more.. Every thing you do takes your energy and gives massive pain.

I had a letter from my pain clinic consultant which said she doesn’t think she can help me as my pain levels are too high, too debilitating and my body doesn’t work well with the opiates I am on, ie hardly work.
What she does again suggest is I go as an inpatient to Baths pain management centre and they may be able to help me..

First off, how the heck am I supposed to get to Bath? It’s a 40 minute train journey from here, not including getting to the train station, waiting for the train, the journey to the hospital after the train… Sitting up and being in a wheelchair the whole journey which shakes my legs and back up so much I can barely stand for days.
I don’t want to be stuck in a bed, noise, lights people, bustle around me and a kinda guinea pig they will poke and prod.

Apart from the mumbled, usually a few days..I have been given no real time scale how long I would be in hospital which is never good.

But my options are, I put up with the pain and continue to look for painkillers that don’t make my body scream in pain anytime I move a body part, or I go to the hospital which would cause a massive crash and be in there for an uncertain amount of time.

They’re not good options, and this upsets and angers me.

Because I desperately need to reduce my pain levels but I am now being told my pain clinic can’t help me so I’m back to square one.

So what am I supposed to do? How am I going to live in constant bodily pain day after day, year after year?
My hands and feet are now swollen again and laying down doesn’t do anything but make the whole body throbbing worse.
It’s difficult to do anything at the moment, even breathing causes pain!

I will continue to look on the web for anything that may help me, fingers crossed I’ll find something.

On a positive note, I am extremely happy about something I’m managing to do.

I have been reading, reading!!
I had the idea of writing down what had happened during each chapter so I can look back on it when I forget.
So I downloaded a book and it’s exactly what I am doing, writing as I read.

This is a huge development, yes I constantly forget what the previous paragraph or page said but I can get a memory jolt by looking at the notes I’ve written.

I am so so so happy about this! As I’ve said before I was a total book worm, and not being able to read has been extremely difficult for me.
Reading was always my escape, from stress, problems, illness and life. It relaxes me, makes me feel comfortable and stories, plots, style of writing fascinates me.

So I am escaping the pain for a lil while by reading and I am very happy doing so. It’s good to have something back in my life that I have really missed. Good to feel I am achieving something despite the pain I’m in 🙂

Results

I’m very pleased to say I had my results and apart from my muscle swelling off the chart and really high white bloods cells still, they all came through clear! 😀

I phoned the hospital who told me my results were through but they couldn’t tell me them, it had to go through my doctors. So I phoned my doctors and got them to phone me yesterday morning, with the good news.
I am relieved, and now can look into pain/muscle meds to hopefully help me. I am researching different meds, it’s crazy I have to do this but if I didn’t I wouldn’t get them.

I’ve been rather unwell this week, I hurt from head to toe, my skin feels so tight and unbending I can hardly move properly. I’m still half blind too and the two week pounding headache continues.

Things are difficult at the moment because of this, any movement makes me bite my tongue to stop the urge to groan aloud due to pain. My constant headache and eye sight is making it incredibly hard to think or read, hence no post yesterday.

I was talking with my father and he was saying how there must be something they can do, they can’t just leave me this way. But the sad truth is, they can and will.

This doesn’t mean I will give up though. No way. I will research all drugs, treatment, foods etc that have shown to help and decide which ones to discuss with my doctor. I have no specialist appointments until late September and there is no chance that I am going to wait that long for some kind of relief.

Chronic conditions are so neglected, patients are neglected and told ‘there’s nothing we can do’ . This isn’t good enough and I refuse to be told there’s nothing more they can do. I will bug and bug them until I am satisfied all that can be done will be done.

My body may not work properly, my brain might be confused and stutter, I may be bed bound but I will not be left to rot in my bedroom. I will do and try anything at this point, even if that means using valuable energy and body functions.

I’m exhausted just writing that! Ha, but hey it’s worth it. At least my hands are being kind to me at the moment, I can still type 🙂
I am very happy about my results and feel positive about getting the help I need. My doctor is brilliant, I am incredibly lucky to have her and she is always happy to help in any way she can.

In other news, my sons girlfriend had her article published in the speakers corner section of our local paper. I will retweet the post on twitter, I encourage you to read it! It’s brilliant, and I’m not being bias 🙂 it may be a bit odd to say but I am very proud of her. She is an incredibly smart clued up 19 year old, and her writing skills show this. You’d never believe an adult if later years hadn’t if written it. My mum bought a few copies and gave one to me, it’s definitely one paper I will keep! 😀

Home assessment

Yesterday was a day of good news that totally overrode my crash.
I had a call from Atos they had a cancellation and offered me a home visit assessment on Monday!
I’ve been waiting nearly six months for this, and said yes immediately. An assessor will be here between 9-11am. My father will be here to help get me downstairs, open the door and stay during the assssment. He is also going to photo copy all my proof letters, my me and fibro diagnosis, specialist letters, appointments, home move, doctors letter, ESA assessment letter etc and give to the assessser so they can put them towards my claim. I have no idea if they accept photo copies but I also have the originals to show.
I am relieved and apprehensive at the same time. But I also know I am not lying or hiding anything from them so I hope they see and understand that.

The second good news, not in order, is about my son. He got a promotion!
He had the interview on Monday and they phoned him yesterday afternoon. He didn’t get the promotion he went for but they gave him another as the person is leaving in a few weeks, so they offered him his job! He is now in charge of technology in the store and has to go away with managers every few months on talks, tech side of things..
I am so proud! His first job, he hasn’t been there a year yet, and has been out five weeks with his broken foot. But he’s been promoted! And quite rightly, in my bias opinion 😉 though he does do overtime if someone’s unwell at a moments notice, is working in the offices sorting orders and stock and never takes sick days or time off, apart from recently and he was made to due to his break.
I even got a lil emotional when he told me, mothers love and pride eh! 😉

I am still very unwell, but the good news has made me keep smiling. I am starting on codeine again, a bit early but the oramorph isn’t enough and the pain is too much. Hopefully it’ll help! 🙂

My mother and sister are coming to visit this afternoon which will be great. Seeing them is always fun, no matter how I am.
All I need to do is get downstairs, a challenge but with a lil help possible! 🙂

Crash and flare

I’m in a massive flare and crash at the moment.
I’ve been feeling off for a few days and I had a feeling I was going to flare and crash which may sound silly to anyone who doesn’t have chronic condition/s. I noticed my muscles becoming a lil bit tighter each day, my hands and feet swelling in the day and being swollen when I woke. My body felt out of synch, becoming slower and more achey my mind more confused and unable to think properly. I woke yesterday feeling unwell and in a lot of pain, my muscles so tight by the early evening I could barely walk or move. Today at 3am I woke in hell, I couldn’t move for an hour after waking, and when I did move I wish I hadn’t. My muscles are screaming at me, the pain is everywhere and my bone pain is back.

I’m disappointed and slightly annoyed, after a few weeks of being much better my body has whipped the rug from under me and is reminding me that my conditions are always here. The worst thing which overrides every pain, muscle lock, bone ache is disappointing others. I was doing so well, hoping this was a turning point and everyone was so pleased. Now I’m back to square one and I hate that it’s others I am disappointing after their hopes were raised.

I spoke to my specialist yesterday, she has taken me off the pain meds she prescribed and can’t give me anything else until my MRI, x ray, ultrasound and blood results are back. She received a letter from my rhumetologist and wouldn’t say exactly what it said, just that my muscle swelling is off the chart and he’s investigating other possible conditions. I managed to get her to say he thinks there’s something more going on, sneaky of me but her reaction prompted me to do so. After all the letter was about me! I hate all this, oh I can’t tell you exactly stuff.. Um excuse me, he’s talking about me? It’s my body that’s being discussed and it’s my right to know what’s going on. So I have to manage on oramorph and codeine again until my results are through, which will be in a month or so. I have to wean myself off the pain med as my body will go into craving mode if I don’t.. So I can’t take codeine for another week or so and just have oramorph til then… :s

I understand why my specialist can’t prescribe until my results are through, and I need to wean myself off the drug. I don’t blame her, and will even think about her suggestion of being an inpatient to be monitered. I understand but that doesn’t mean I’m happy about the pain that is and will continue to raise it’s ugly head until I get my results. That I’m happy I can hardly walk again or use my right arm properly. This is a bit of a nightmare, which I’m awake for and know it’ll continue for awhile before it fades to a more manageable level.

On a happier note, I have had my owl pendents come through to make owl necklaces 🙂 my partner has bought all the pendents, beads, equipment I have and I still have more to come. I am thinking of selling them and donating a percentage to m.e and fibro charities. I try to donate how I can, giving clothes etc and although it won’t be hundreds of pounds it’ll be something to help aid their research. Also it is giving me something to focus on at the moment. I still have my left arm and half my right hand in use. Until I lose total use of both hands and arms I will continue to make bracelets and necklaces and get around the flat as best I can.

And I have the memories of the zoo achievement to make me smile. That day will make me happy forever 🙂

Waiting on my specialist

Yesterday continued to be pleasent. My son bought a table and chairs set, and I had my first meal sat at the table with him yesterday.
I have missed not having a table to eat at when I can, most of my meals are eaten in bed. So sitting at a table to salad and chatting with my son was brilliant, it’s the moments like that which makes the whole day brighter 🙂

Last night was a bad one pain wise. It had been niggling all day, but by 8pm it decided to rev up the fun! I didn’t sleep until 4am ish and I’m tired and a tad irritable on top of the pain. I certainly wasn’t impressed with the intense pain, but and at one point I recalled a programme I watched as a kid, someone chopped off their own leg because they were in so much daily pain they couldn’t cope with it anymore. Of course my brain then went to ridiculous imagination mode as it tends too and I wondered if I would ever get to that point. How I would manage with no legs, as it would have to be both. And would I stop there or start hacking at other areas, my left arm, right hand and how I would make a cuppa tea, get to the bathroom, down the stairs. In the end I imagined just having a torso and head, though I’d cut the pain and neuro damage parts out of the brain.. I got the giggles at that part, imagining my self with half a brain showing through my head.. Much like Ray Liotto in Hannibal.
I decided to stop that kind of thinking as it wasn’t helpful, but the giggles cheered me up and distracted me for a bit. A friend once said to me my imagination would lead me to the money or prison, neither have happened yet but you never know ;,)

I have an appointment with my pain specialist later today, I will discuss what other pain meds I could try because they don’t work at all again. I even upped the dose last night and still nothing. It again feels as though my bones are aching, along with my usual pain. I’m sure something else can be tried pain med wise, and my neuro meds are continuing to help my seizures become less often throughout the day which is great. So half the new meds are working is good news 🙂

Not too much planned for today, I’m not able to walk very well and my muscles are all really tight. I can’t take codeine due to the pain meds so I’m just on paracetamol and oramorph to take the edge off. I say edge, it’s more like trickle off. But again hopefully there are other options and I just need to talk to my specialist, very soon.. Very very very soon!

Phone calls, phone calls and more phone calls

Later post today as I have been trying to sort things via phone.
My specialist got back to me today and has upped my dose again do I’m on 150mg twice a day. She’s so nice and helpful, explaining everything without patronising, making sure I’m ok with everything that’s suggested and she’s phoning me next week to check my progress.

I phoned the council and apparently someone is definitely going to get back to me this time.. I won’t hold my breath though as I’ll probably die in the process!

I didn’t do much tidying yesterday as my legs decided the were gong to really play up and make me walk like I had four joints in each leg all moving in different directions. Honestly I looked ridiculous, I was stumbling, holding onto any surface I could and unable to stand straight. But it was comical too, I have no idea how my legs could move in so many directions at once, I could make a fortune at a circus!
They are slightly better today, still bandy but I’m stumbling less. They hurt, ache and I feel like my muscles are swollen which tests show they are so it’s no surprise! Yet it’s not bothering me too much, it’s odd how you can get used to symptoms that would send others into panic. It doesn’t faze me at all anymore, I just adjust myself to what symptoms are happening that day. Thank goddess really, this time last year when I woke with legs that wouldn’t work made me deeply scared, knowing and accepting is easier and less damaging.

The blood tests I had last week weren’t for the rheumatologist, I phoned to ask and rearrange them for next week. I’ll ask my doctor about it onFriday during my phone appointment. It must of been been at my doctors request, I can’t imagine the nurse came round just to take my blood for funsies. I may have vampire blood but the crap that’s in and not in it makes it useless so no good for the dodgey blood selling market.. 😉

All in all I’m tired off phoning people again and sorting out the stuff they should be doing again. I am resting for the evening now, electric blanket on full, legs straight in bed and 150mg of painkillers which will hopefully help. Or make me sick, time will tell.. Oh the joys! 😉

Happy and content

It’s been a lovely Sunday so far. I had a lie in, and only woke a few times in the night which is unusual.
After an hour or so and my morning handful of tablets, my partner and I finished sorting my room then played a board game.
I am amazed I can now sit long enough to play the game. Ok, I constantly shift my position and my back aches like hell but a rest on my electric blanket for a couple of hours after eases the worst of it.

I continue to feel better than I did a month ago, I can do more without being in agony which it still expect to feel. I expect this because it became part of my life, even sitting up was more than I could bear. Now I can sit up on the floor, on a cushion and not be wiped out for days afterwards.
The combination of new medication, fruit diet and stretching constantly has helped so much. The pain mess continue not to work, even now they’ve been doubled. I have to phone the pain clinic tomorrow to talk to my specialist about this, and the fact I am going to run out of them by the end of the week as they only gave me a months supply at 2 a day. Now it’s 4 they’ve rapidly gone down. I still need to phone the rheumatologist to ask about the bloods I had taken too. I’ll leave both until tomorrow.
My bed rail is also being picked up tomorrow as I can’t use it due to my bed being too high up and I would rather give it back and have someone who can use it have it. There’s no point in me hanging onto it when it can be put to use elsewhere.

I am still feeling much happier and upbeat in myself. I wake feeling happy to do so, looking forward to the day ahead. I am still losing weight, not massive amounts but slowly and gradually. For the first time in a year I have hip bones again! I was ecstatic when I not only saw them but felt them as I lay on my side in bed. I am ecstatic that the horrible bloated fat roll body I have had is slowly becoming more of a human shape again. That alone is restoring my confidence and I can wear my favourite shorts again! A month ago I tried them on but the button was two far away from the zipper to fasten together. God that was depressing, my stomach was just there, a bloated, round object that mocked me and my shorts. But I am the one mocking it now, it may have won the battle for a year but I have won the war and laugh at it’s decreased size, ha victory is mine!! ;D

My room is so much better, the light is now away from my eyes and although I’ve lost space it’s easier to get around. I have four boxes and three massive bags full of clothes and clothes stacked in my room that I need to sort through so that’s also taking up room and making it look messy. My partners dad is going to take anything I don’t need to be recycled which I really appreciate. He’s a lovely man and is someone who goes out of his way to help people, a trait my partner has too.
It’ll take awhile to sort but I’ll get there in the end, by gum I will! 🙂

For now I am cuddling up to my partner, watching a film and feeling happy and at ease with life. It’s a feeling I am extremely happy to have 🙂

Pain meds

My new neuro/seizure meds have been brilliant in making me not only feel better but in stopping leg locking and leg spasms.
The pain meds I started on Monday haven’t been so good. I have had tremendous pain yesterday and today, my limbs swelled and muscles are burning. I phoned my pain clinic specialtist but she wasn’t in so was referred back to my doctors to help. My Dr was really quick in getting back to me and has highered the meds to four times a day instead of two. I am really hoping this will help, the pain hasn’t faded so far and by past experience I know will linger for days. Here’s to the higher dose helping! 🙂

I phoned PIP yesterday then Atos and I was told my claim had been processed and a assessment is needed. When I asked how long that would take they said it could be another ten weeks… So it’ll be nearly seven months by the time I see someone and another 3 week’s on top to decide if I’m unwell enough to qualify.. It’s absolutely ridiculous, I am told I need carers, home help yet until I am accepted I won’t recieve help. It’s a circle of hope, frustration, frustration, hope that never stops. It’ll stop eventually and I will just have to be patient and phone them every week to ask them if an assessment date has been made. Experience has taught me to constantly phone asking for updates as it keeps them on their toes to actually do something and it annoys the heck out if them and they will give you an appointement just to get rid of you. Underhand? Maybe, but it’s for a worthy cause! 🙂

I was due at the hospital for X-ray and blood tests tomorrow but there is no way I can get there to have them done, plus if someone puts anything on or in my arms then I will jump to the ceiling! Best to cancel and I have re booked it for next week. Better to be safe than splattered on the ceiling, that isn’t going to be pretty for anyone concerned.
😉