Feet and Fatigue Part Two

So, we got into the ultrasound room, and Ady lay on the bed. I was allowed to watch the telly with MrB and our nurse (she is really lovely).

He put the gel stuff on his ankle and put the thingy thing on it.

The nurse and MrB started saying “Oh my goodness, look at that!!..no wonder you are in pain”

All I could see on the telly was a load of red and orange colours as he was moving the thingy thing on his ankle...it meant nothing to me.

MrB and the nurse explained that all the red and orange was fire, burning and inflammation in his ankle and foot, and there was a lot of it!

They also showed me where the synovial fluid was. I cant remember if it was in the right place or if it had leaked. I was too amazed at the whole thing to take it all in tbh!

Anyway, I forgot that poor Ady was lying on the bed and this was his foot we were looking at!

The next minute, MrB got his needle out again to have another go at getting it in the joint.

Blimey, this needle was a few inches long!

So, there was Ady lying on the bed, and MrB had this bloody great needle in his ankle, trying to get the ultrasound to guide it into a space in his joint.

The nurse was telling Ady to take some deep breaths and that it wont be long and I was there thinking “Blimey, dont look at Ady cos I will cry, dont look at the needle cos I will faint...just look at the telly”

MrB was twirling the needle at lots of different angles trying to get it in and then suddenly he said “Great,,,got it!”

I thought “Feck me, thank God for that!”..I think Ady thought the same but for different reasons!

I was surprised at how much blood there was actually but anyway.

Mr B said that in an hour or two, Ady will probably be swearing a bit with the pain while it flares a bit more, but then it should all calm down. He didn’t know how long for but he hoped for a while at least.

He has also asked our nurse to set up an appointment with the podiatrist to sort out something brace like I think, or certainly something to lift his arches anyway, for his feet, to help out with the mechanical knackerdness problems.

She is also going to see us in the New Year to train me on how to inject him with the Methotrexate weekly.

There is another set of drugs which are even stronger called Biologics, I think. Unfortunately, Ady can’t have them for five years cos there is a concern that they could ignite dormant cancer cells.

I dont hold out much hope for the Methotrexate but I really do hope I am proved wrong!

He has started back on the weekly tablets at the moment so let’s see how we get on.

At the moment, Ady’s shoulders are really playing up, along with the top of his neck. His right wrist comes and goes, in fact the night before Christmas eve he woke me to ask for some morphine because it was hurting so much. His left foot is fairly comfortable with the odd pain here and there, and his right foot is starting to feel like his left foot did. Some of his fingers are looking like sausages.

Each morning, I bandage his feet with tubigrip and ankle supports just to make things easier for him.

Since seeing MrB, I think Ady has accepted that all his fatigue and pain is because of his arthritis, and his flare is because of stress.

He has stopped fretting about getting back to work now. Especially when he asked MrB if he should crack on and get back to work, Mr B said that he needs to win the lottery and go and live somewhere warm and do gentle exercise.

Poor Ady has really struggled in his mind about whether he is being lazy. His biggest problem has been when he has told people that he is in remission from cancer but is in pain from arthritis now, some people replies are “Oh, only arthritis? Everyone gets arthritis”..such brush off comments have mentally tortured him.

Ady says that the pain from the arthritis is far worse than any pain he had from his cancer operations.

Arthritic pain stays with you 24 hours a day, varying in severity. It is all over his body. His joints are hot, swollen and inflamed. His psoriasis has flared and is sore and his body is as stiff as a board.

And the worst thing of it all is that he is talking about swapping cars so he can drive my automatic cos it hurts his left foot with the clutch....Jesus, whatever next. I dont want his crappy Y reg heap of shit...*shudders*

Feet and fatigue Part 1

So, if you have been keeping up with this blog, you will remember that Ady came off the methotrexate as he felt it was doing bugger all.

His rheumatologist offered him a couple of other drugs in its place. One called something or other with lots of ‘X’, ‘U’s and ‘R’s in the name. One of the side effects written down was that it could cause certain types of cancer...well who the bloody hell in their right mind would want to take that...I ask you !! and the other one was called leflunomide which didn’t seem to cause certain types of cancer. All of these drugs have pretty heavy duty chemicals in them, so even if they don’t cause cancer, they probably bugger the rest of your system up instead, which is why you have to be monitored so closely with constant blood tests and such like.....anyway, Ady started on the Leflunomide and bugger me...up to the moon he went...he was as high as a kite, completely washed out, slept all day and just couldn’t focus on anything.

He said it felt horrible so I rang the rheumy nurse and she suggested taking the tablets every other day to see if it made a difference and once he got used to that, he could go every day, but don’t give up just yet, and anyway, she said it could be the morphine. Ady insisted it wasn’t the morphine, he knew how that made him feel and this was a different feeling altogether.

So we went down to one every other day and you could tell the day he had his tablet as he was completely washed out and fuzzy and on the tablet free day, he was fine. We spoke to the rheumy nurse again and she said to stop the tablets for a week and then try again to make sure it was the tablets causing the problem.

In the mean time, we saw our now long suffering GP, who by the way is still the best one anyone could ever have and is fantastical! And when we told him what was happening and that Ady was going to try the tablets again in a week. He thought that Ady shouldn’t put his body through more turmoil when it clearly is the tablets not agreeing with him.

He agreed to get the rheumy appointment brought forward so we can see if we can get Ady’s arthritis under control. He could see that depression was kicking in and Ady agreed to not try the tablets again.

Poor Ady, he desperately wanted to be getting back to work. He hates being unable to provide and says “but it’s only arthritis, it must be something more, it’s never been this painful”

I went off and had a good old google. Christ, have you ever looked on an arthritis forum? Poor, poor people is all I can say. They suffer the same way Ady does, some more so and some less so, but they all talk of the same pain and the same problems....the same medications and the same side effects.

I read some out to Ady that were relevant to him, and I think he was coming around to the idea that it can be ‘just’ arthritis causing all his woes.

We went off and saw our rheumy chap, really hopeful that something can be done about the pain especially.

Well, what a disappointment that was!

The day we really needed him to really listen to Ady and to understand and look at his joints, empathise and take some time with him and he did none of it. The whole visit, we felt, was a waste of time. Ady actually felt a bit of a fraud and his feelings that perhaps he should get back to work came flooding back.

I had worked really hard, trying to get Ady to see that everything he was going through was caused by an arthritic flare. It even said on Google that stress is one of the big causes of arthritis flares  and Ady has been pretty stressed over that last couple of years!

Our Rheumy guy suggested that Ady should go back on the methotrexate, saying that his symptoms had got worse since he came off them. We told him that no, he came off the methotrexate because his symptoms had gotten worse while he was on it, suggesting that it was no longer working. So Mr rheumy said that instead of tablets, he should inject it instead, it will be stronger and have more of an effect.

We were to make an appointment with our lovely nurse for training on how to give the injection. Ady was not happy at all.

Our lovely nurse who has known us for at least ten years could see that we were a bit pissed off. We told her what had happened and she suggested that we could do with a second opinion and she knew just the chappy who enjoyed a challenge!

We were to wait for her to ring us with an appointment.

True to her word, she did ring us the next day with an appointment for Friday at 10.30 with DrB.

Oh, my, God, what a nice man he was!!

It turned out that our lovely nurse had quietly pulled a few strings to get us this appointment, and had spoken to MrB about us and he agreed to tag us on the end of his surgery. He spent over an hour with us. Bloody hell !!

He went through everything from top to toe.

He explained that Ady has a bulging disc which is pinching his nerve causing sciatica down his left side. He had a pain that started in the middle of his chest which went right through to the back and radiated throughout his shoulders and has finished at the top of his spine. That is all to do with degeneration.

He had a good look at his hands and then moved onto his feet. It was fascinating!

Ady stood on the floor and MrB said “Hmm, you have big problems with your feet”

He got Ady to lie on the bed while he examined him. I really wish I had recorded it cos he told us so much!

He explained that there is a nerve running down each side of the foot. Because Ady’s ankle is collapsing inwards, it is pinching the nerve on the inside and because his actual ankle joint has collapsed, that is pinching the nerve on the outside. He prodded and poked various parts and said where there would be pain and what exactly was causing it and all how the foot worked.

He also said that Ady’s Achilles tendon was inflamed due to the type of arthritis he has and his toes were numb because of nerve damage. Basically his feet are buggered, but the left one more so.

He even let me loose with the whacky thing to whack on the knees to check for reflexes and the pokey thing you run on the sole of the foot. He then said that he would give Ady a steroid injection into his ankle joint and wrist joint to ease the inflammation.

Ady did hope that he wasn’t going to let me loose with the fecking great big long needle and start jabbing that in him!

Ady had the wrist injection without a problem, but when it came to the ankle injection, MrB couldn’t get the needle in the joint...at all. Poor Ady was lying there, I have to say, being far better behaved than I would ever be, while the consultant was wriggling the needle around trying to get it in the joint.

In the end, he decided that he needed some ultrasound help, so we all went off to the ultrasound room.

As we were walking down the corridor, the consultant asked our nurse to get leaflets and information on fatigue caused by arthritis, some info on psoriatic arthritis and another one on feet and podiatry.

He told Ady that after what he has been through the last couple of years, he is not surprised at all that he arthritis is causing problems and that he will most certainly have fatigue, bad enough to make him feel that his thyroid has packed up.

Ady told me later that he was so relieved to find someone that completely understood, he felt like doing cartwheels up the corridor!

Blimey, this is going on a bit so I will do a part two....hang on.....

Ady's Test.

Tonight, I am babysitting for my niece’s two boys. They are very cute indeed! They are about one and three I think.

The one year old has gone to bed and has been asleep since. The three year old has been a bit restless and tearful cos mummy and granny have gone out dancing (sorry Andy, he didn’t mention granddad) and he wanted to put a skirt on and go with them.

My niece told me that he mustn’t come out of his room and that if he wakes, then I must do a firm ‘goodnight’ and shut the door.

Well, we only had a little drink and a cuddle together downstairs until his favourite rabbit was tired. We did that a few times and I think he is asleep now...Oh dear, I hope that hasn’t fecked up his sleeping pattern....never mind, eh ;)

Anyway, I am having a lovely evening, in peace and quiet to get on with my blog. So much happens so quickly, that before I know it, I am all behind!!

I am going to go back a couple of months and work forward. If I repeat myself, then just pretend I have dementia or something cos I can’t remember what I have written half the time anyway!

Right, lets crack on to around the time that Ady was wanting to get back to work, but his arthritis was stopping him.

When he had the bone scan and it came back that he had bone degeneration and no cancer, now this is quite difficult to explain, but he thought, ‘Is that all it is?, just a bit of arthritis?..why am I in so much pain then?’

He sort of felt that it would have been easier if he had cancer in his bones, not that he wished it upon himself you understand,but because other people would understand the pain and fatigue he was feeling, but arthritis? People have said to him before now “Oh everyone gets arthritis”

For years and years, Ady has just got on with his arthritis, he has never let it get the better of him, but this time, it is literally flooring him!

Ady would have this battle going on in his head that he doesn’t have cancer now and all it is, is arthritis. The fatigue must be because he is used to not working and so therefore he must be being a lazy bugger, sleeping the day away. One day, he asked me to phone our GP to ask if his thyroid tablet dosage was correct, because he felt as if someone had pulled a plug on all his energy and it had all drained away, and walking was like wading through thick treacle.

When the GP said his thyroid medication was correct, he decided that it must be because he is being a layabout and a benefit scrounger, which reminds me that I must remember to tell you about the haircut and make over my sister and niece organised to stop me from looking like a benefit scrounging chav hag, which I have to say, with hindsight, I was starting to look like one!

Anyway, Ady decided that as his thyroid was OK and he was in remission with both cancers, then all he has is his usual arthritis which he has had for years, then if he takes his co-codamol and ibuprofen with a swig of morphine, he can crack on and get back to work and the fatigue will wear off once he gets going *sigh* He really believed that his fatigue was just laziness.

He was getting up in the morning, taking his tablets and having breakfast and then going back to sleep for a couple of hours. He would then get up and potter around, sometimes he would take morphine first thing in the morning and sometimes when he had woken from his morning sleep. He would find he had just nodded off in the afternoon, usually during Dickensons Real Deal, well, frankly, that shit is enough to make anyone nod off, and the next minute it would be tea time. Then he would also sleep pretty much most of the night, apart from getting up on average three times for a wee.

I told him that there is no way that that amount of sleeping is from laziness. If I was sitting around not doing very much, there is no way that I could physically sleep that much..ever. There must be a medical reason for his fatigue. Ady, on the other hand is quite convinced that he is just being lazy and that he should get back to work.

He also said that he doesn’t really feel that enthusiastic about work. The very thought of work makes him feel knackered. I tried to explain that if he was feeling well, then he would be chomping at the bit to get to work...it is in his blood, but at the moment, he is clearly not well, not to mention the pain he is in!

This whole dilemma went on for quite a few weeks, well, since August actually and he just couldn’t understand why all of a sudden, his arthritis has flared so much...it has never flared this much before. He has had times when, say his finger has been in excruciating pain for a few weeks and it has gone hot and swollen, then suddenly, it has gone ‘pop’ in the joint and the pain goes for a while, but this pain is different...much more painful.

I told Ady that there is no way on this planet that he can work full time at the moment and provide for us...not in a million years. Ady insisted that he could.

So, to prove my point that it was not laziness causing his fatigue and he wasn’t being a scrounging bum, I told him that starting for the Monday, he was to get up, take the girls to school at 7.45, come home, stay awake and I would give him a list of jobs to do around the house. He could have a tea break, just like he would at work, and he could have a lunch break, where he could have a light nap if he wanted to. He could finish ‘work’ at 4.45.

Ady decided that it was a silly idea, but agreed to it. He thought it was quite an easy test and he could prove to me that he was fit for work. I knew full well that he wouldn’t last to the end of the week and wondered what excuses he was going to make for it not working.

Monday arrived, and he set his alarm. He was actually going out with his friend for the day that day, so I didn’t prepare any jobs for him. He wasn’t going to have many jobs anyway, just getting bits of shopping from the village and emptying the dishwasher, that type of thing really...maybe clean the windows...nothing strenuous.

He took the girls to school that morning. They were pleased they didn’t have to catch the bus and Ady told them ‘Your mother thinks I should take you to school in the mornings and do jobs around the house...she thinks I cant cope.....I should be getting back to work instead of mucking around with this’

The girls looked at me and rolled their eyes!

Ady came home from dropping them off. He muttered something about having a sleep to which I gave him one of my told you so looks so he stayed awake.

By 10 o’clock, he looked absolutely shocking. His friend turned up to take him out. He looked at Ady and said “Bloody hell, are you feeling OK? You don’t look very well..we dont have to go out if you dont want to”

Ady replied “No, I am fine...the wife thinks I am being a lazy bugger with all this sleeping...she thinks I should stay awake so I can get back to work”

I chuckled to myself at the way he was turning it all around to blame me for when it all went wrong. I have to say, I didn’t think I would be proving it three hours into the first day!

The boys went out for the day and as soon as Ady got home, he was reaching for the morphine bottle.

Tuesday came and he took the girls to school again. He did admit to me that on the way home he felt ‘ever so funny and peculiar’ and had to pull over for a bit. He decided that perhaps it was because he was taking his tablets earlier in the morning or something. “Rightyho” I said

He did sleep on the Tuesday, quite a bit actually and as he felt peculiar that morning, I let him. I thought I had proved my point and now perhaps he will realise that he is unwell and not lazy. Well, no, Ady moved the goal posts slightly and said that we had agreed that he was just taking the girls to school and he was allowed to sleep a little bit and he would take them on Wednesday.

Wednesday came and he admitted defeat. The poor bloke was on his knees in absolute agony and severe fatigue and feeling pretty fed up about it all. He hates it cos I always win!

At least now, when he feels guilty that he is not working, and he listens to all the benefit bashers and hears all the stuff in the media and from the government about people scrounging from the welfare system, he can be rest assured that he isn’t one of them. And when he is having a not so painful day and he starts on about ‘getting on and getting back to work’, I can remind him of the week he just had to take to kids to school, how does he think he is going to work full time.

I do completely understand his frustration, but for goodness sake, has he forgotten what he has been through that last few years?

Ady.

I am going to try and get a couple of weeks worth in this blog, but I might have so split in into two...I will see how I get on.

So, there I was, one morning a couple of weeks ago, sitting having my morning cup of coffee and fag, deep in my own thoughts before everyone else got up for the day. I really hate it when I am woken up abruptly and immediate demands are put on me. That just pisses my whole day off, so I like half an hour of peace first.

Anyway, there I was and it was lovely and peaceful. The next minute, there was an almighty crash. I thought, bloody hell, that sounds like a wardrobe or book case has crashed onto the floor.

Then I thought, hmm, we dont have a book case upstairs and the wardrobes are nailed to the walls. Immediate panic set in. Christ, it must be Ady then!

Then I thought, bloody hell, there is no noise, no “Ouch” or anything! Perhaps he has passed out or something..and I raced upstairs.

Well, yes, there was Ady, sprawled across the bedroom floor.

“Morning darling” he said

‘He seems alright then’ I thought so I said “What the bloody hell are you doing?” (does the question mark go before the speech mark or after, I can never remember)anyway,

He said “Well, I was getting out of bed and I got my toe caught in that bit of begging on the floor there. I just couldn’t stop myself from going down like a sack of shit and I nearly smacked my head on the mantel piece”

I was nice and checked that he hadn’t REALLY hurt himself or broken anything, but he had walloped his elbow and his knee, so I helped him up.

That’s right, it was the morning of the CT scan cos our neighbour sent a text at hospital asking if everything was OK cos she heard it!

As I helped him up, he said “See, I told you I was stiff in the mornings”

I said “Yeah, but you are stiff in all the wrong bloody places now up you get!”

On the Saturday evening, we had friends around for the evening and Ady was telling them about his fall. We were having a laugh and a joke about it, as you do, they are a great bunch of friends with wicked senses of humour. One time, I had a backwards dinner party where you started with coffee and mints, cheese and biscuits, then sweet, then main and then the starter...Dave, the cheeky bugger, turned up with an empty bottle of wine.

Anyway, I digress. Ady told them that if I was at work that morning, he would have had to wait on the floor until I came home to help him up cos he couldn’t get up himself.

I thought bloody hell, I really wonder if he realises how bad that is...I dont think he does really.

I will do the second part in a separate blog cos I am a celeb is on !!

Steph's day Out

Steph has always been a bit of a singer and is one of those girls who wants to be famous.

She spends a lot of her time on her keyboard, looking up on the internet how to play it. I used to teach her the piano when she was younger, but we had to get rid of it cos it took up too much room and was a bit noisy for the neighbours!

The teachers at her school have noticed she has a bit of talent in this area and are giving her free singing and keyboard lessons which Steph is just thrilled about!

I noticed on Facebook, that a company called Audio Sorcery were doing a competition to win a Gift Daze singing experience. Oooh did my eyes light up !!

All you had to do was ‘like’ the page and at the end of the month, they would pick a winner. I decided that with our luck, there was no way that we would win if it was down to me, so I got to work on all my facebook friends and asked them all to ‘like’ the page thus entering them into the competition. That was everyone was a winner, the company got lots of ‘likes’ and Steph had more chance of winning.

The end of the month came, and my lovely friend Sal won the competition and gave it to Steph. Bless Steph, she was jumping up and down with excitement. Charlotte, on the other hand couldn’t think of a worse torture!

Carol messaged me on Facebook to say she had been told about our traumas and said that instead of having the two song prize, she was going to up it to five songs with a couple of free CDs !!

Oh My God, I dont know what to write now, except to say that not only was Ady pissing himself cos of his surgery, but now Steph was too with pure excitement!

I rang Paul (I think Carol does the advertising and videoing bit and Paul and Dale do the musical recording bit) and he was lovely. Steph was booked in for October half term. In the mean time, they sent her a CD with hints and tips on how to practice her songs, so off she went to practice...a lot.

Steph decided that she needed a posh frock to look the part cos after all, she is going to do some proper recording and I decided that no, she jolly well doesn’t, trousers and a top will do just fine thank you very much!

Poor Steph decided that I was going to ruin her day cos she ‘had nothing to wear’ *sigh*. That girl has a room full of clothes, yet she never has anything to wear....

She did eventually find something to wear, and decided that she was glad she didn’t buy a dress cos perhaps that would have been a bit over the top. I didn’t like to tell her that mother knows best, I will leave her to suss that one herself.

So, the day finally came, and off we went. It is just outside Tunbridge Wells. Frant, actually.

We got to the studios, not very sure what to expect, and we were greeted by Paul, who was a very cheerful chappy who made you feel very welcome indeed and he showed us into the green room, which had green things in....

I was expecting to have to sit in a waiting room on an uncomfortable chair or something waiting for three hours, but no, there was a lovely sink your bum in sofa and a kitchen to make coffee.

Dale was recording Steph, and  he actually asked me if I wanted to come into the studio to watch it all! Brilliant, I thought, what fun. Steph thought he was really pushing his luck when he asked if we wanted to do a duet though.

Dale was brilliant, he really was. Steph was nervous at first but he was very reassuring and praised her singing and she very soon got into the swing of it.

Time flew very quickly and Steph had recorded her five songs.

She sang Adeles someone like you and Make you feel my love, she sang Valerie by Amy whatsername, Beautiful by Christina I cant spell her last name and Man who cant be moved by that bloke on ‘The Voice’...erm....Script or something..never heard of them myself.

Steph had a really fantastical time and she has decided to sell her CDs for £5.00 and is sending the money to The Pickering centre in Tunbridge Wells who have really helped us along the way.

She may be a teenage madam at times but she has a heart of gold that one.

My little Steph has quite a soulful voice but if you want to hear it, then you will have to buy the CD yourself!! All proceeds to charity !!

I want to plug Gift Daze because they couldn’t have been nicer. They didn’t have to give us what they did and it’s not often you have a company that thinks of people before their profits!

And whats more, the CD is very professionally done!!

Thank you Carol, Paul and Dale. Steph had the best day and it will be something she will remember for ever. I know what to get her for next years birthday now!!

If you want to have a sing song and have a recording experience, they do all sorts, parties and everything, I fully recommend this company, they were absolutely brilliant!!

 http://www.giftdaze.co.uk/index.php

Review Time.

As I am up earlier than everyone else, and it is lovely and peaceful, I thought I would get a bit of blogging done, cos I am quite behind. Things seem to be trotting on a pace at the moment what with one thing and another. I really want to tell you about Steph’s studio recording experience and her CD she made and I want to tell you about Charlotte and her exams and how Ady is doing, but this one will have to be about the benefits *sigh*

So, back in the summer, if you remember, I was called to a ‘Back to Work’ interview at our local job centre plus office. I was a bit miffed at the time cos I do work, looking after two elderly people in the community and lunch time supervising at our local primary school. This fits in very nicely for us as I can change and swap things around at short notice to take Ady where he needs to go. Betty and Brian (my two elderly people) are only too happy to oblige as I have known them for years and they know Ady and the girls and our situation.

So anyway, I went off to see this chappy and he said that he just wanted some information on me as they had none and it was great that I was working. He was quite helpful actually and made sure we had everything we were entitled to. He told me that it said on the computer that we were going to be reviewed in January 2013 for ESA (employment support allowance or the old incapacity benefit) to see if Ady was now fit for work. We could then go on the ‘work related’ benefit or some such thing. It meant that he could work a certain amount of hours and still claim benefit to ease him back into work. If he found it too much then he could go back on ESA...I think...

So having gone to the interview with my hackles slightly raised, I did come away feeling that it was helpful and he gave me his number to contact him at any time.

I told Ady all about it and we agreed that it was a very good idea and it was great that we had a focus for the future and Ady had a goal to reach in January.

Ady said that if he could get back to work earlier, then he wanted to, but I said no, he should wait until all the results are in from his cancers (his last one would be at the beginning of December) and if he was clear from those, then we are rocking, let’s have a nice Christmas and then we can get back to normal and start again in 2013. With the trouble we had had with the benefits system, there was no way, I was cancelling anything!!

Ady reluctantly agreed, although was quite unhappy about claiming benefits if he was going to be feeling well enough to start getting back to work earlier than January, but did agree that it would be a bugger if we had stopped the benefits and the December PSA test said his cancer had come back....Christ, can you imagine it!!

This whole conversation and Ady’s dilemma was back in the summer, May, I think, when he had finished the radiotherapy and was on the hormone therapy, ready to finish that in August, PSA test in September, Bowel test October and results in November, another PSA test in December, then back to work in January. Easy peasy. His GP did explain to him that he has been through quite a bit over the last year or so with his cancers, and he also has his arthritis and other co-morbid conditions to think about..why the rush back to work? But that is Ady for you, he has a very strong work ethic in his blood and will be out gardening and farming in all weathers, never wanting to let anyone down.

Ady was very fatigued and a bit confused during the hormone therapy but actually felt no arthritic pain at all, or was it during the radiotherapy he felt no pain...I can’t remember now, anyway, it’s neither here nor there really, the fact is, that he felt very comfortable in his bones up to the second week of August, two weeks after finishing the hormone therapy. He was looking forward to and planning on getting back to work.

I think I told you all about the bone pain Ady started getting and his morphine and scans and stuff a few blogs ago. The problem is, that I am having to write this blog now because the DWP have sent Ady’s review form early and they want it back by December 11^th, all twenty pages filled out. Bloody hell, I feel like I had only filled the last one out a few weeks ago!

The last time I had to fill these poxy things out, I very nearly lost all my hair and the plot. At one point, I will admit, I did seriously consider asking our GP for some tranquilisers or something to help me cope but I dont like eating chemicals and now I am glad I didn’t cos I managed without quite well in the end.

This time, my lovely new bezzie from Perennial has offered to help. When she came to see us over the bathroom saga, she was very surprised that Ady was on the lowest rate DLA and certainly feels he should be on a higher rate. I told her that I had to fight hard to get that as we were turned down in the first place and was going to give up with the whole bloody thing.

She also has offered to help with the review in January and made a date for the 3^rd. At the same time, she was going to get a change of circumstances form from the DLA and get a higher rate for him.

I am a funny cow that likes to know exactly what is going on at all times and because I have been doing all this on my own, felt a bit uneasy that someone else was going to take over. Blimey, what if she didn’t know how to fill the forms correctly and what type of wording to use. What if I am wanting her to write one thing and she wants to write something different and hers is wrong.

I rang Sue to tell her that the forms had arrived early and we had a good chat about it all. I was really relieved that she DOES know exactly what she is talking about. She can even fill the DLA forms out with me and Ady and then she is going to take them away and deal with them. Everything is going to go to her and she will do the appeals for us and everything.She is going to take away all that worry.

 Christ, what a relief, I can tell you. All I am having to do is collect information like all his hospital visits over the last and the next three months, go through his medication and write down what he takes and when with side effects, I have got a copy of his bone scan and the lovely Drs receptionists have typed out all his Drs visits and blood and nurses visits for me. I have to look up all the telephone appointments we have had, which there have been loads and write a diary of everything I have to do for Ady; thats an eye opener!. Then all I have to do is hoover the house and bake a cake for Sue to come on Thursday.

The forms have arrived in the post and I haven’t even looked at them.

Poor Ady is in a terrible state, thinking that they are going to want to send him off to an ATOS medical and then deem him fit for work. Ady wants nothing more than to be fit for work but he knows that he cant even walk from one end of the house to the other without the most hideous pain in his feet and on most days, cant even stay awake for more than 3 or 4 hours at a time.

I actually feel desperately sorry for him, he is in absolute turmoil and sinking into a depression, desperate to work and provide, worried people think he is being lazy cos he can look quite well sometimes but just simply struggling. His hands were so weak and painful the other day, he couldn’t get the lid off the Lurpak.

I will admit that at the moment, things are quite stressful with the review hanging over our heads, but thank goodness for Sue!

Perennial.

Our bathroom has always been pretty hideous. The bath was cheap and plastic. Plastic baths are OK, but not when they are made of thin cheap plastic!

Anyway, it has suffered years of abuse form the girls when they were younger. Every evening, the girls would play in the bath with their toy figures such as kings queens and horses mainly, and they also found the bath a good place to play when it was empty.

Each game would usually end up with the evil witch being nasty to the princess and the prince riding along on his horse to save her. This means that the whole thing would end up in a lot of punching, slapping and screaming while the prince and evil witch fight. During each fight, lots of things would get dropped in the bath and eventually, the poor bath would get hairline cracks in it. That is how cheap it was!

Just in case you were worried, the prince always won and him and the princess would live happily ever after.

So, Steph was having a bath one evening and was singing away as usual. I noticed water dripping through the dining room ceiling. Well, the prince, princess and evil witch had cracked the bath and the water was coming through the ceiling and the light!!

So after that, we could only have showers, much to Stephs horror cos she does love to wallow in a bath that one. Ady put patches of silage tape over the cracks.

The shower was one of those hideous ones from the taps with a pully knob thing to make the shower work or the taps work. Well it never worked very well at all and as soon as you turned the shower on, the flipping hose would woosh off the end of the shower head, so that got stuck with silage tape too. Bloody thing, even Ady with all his urine woes could piss faster than the shower!

Ady will always make do with what he is presented with, but I never liked him using the shower and climbing in the thin crappy bath. It’s slippery at the best of times, but when you are in his state of ill health and decrepitness, it’s time to think about a replacement. Also, with his arthritis, he will just struggle on quietly until he has an accident. Realistically, the whole bathroom setup is not geared for Ady’s safety now or in the future.

There is a website called Turn2Us. They are fantastical with all things benefits related and charity related.

I told them of our problem and asked if there were any charities or organisations that could help with the funding. If you don’t ask, you don’t get and it was worth a try cos there is no way we could afford to do it ourselves now.

They gave me the number of a charity called Perennial. They were called The Gardeners’ Royal Benevolent Society but have had a name change. I rang Sue, who is now our case worker and she was lovely. As Ady has been a gardener all his life, she was sure they could help us.

During all this, I had got mark, our local builder and friend to come and look at the bathroom to see what could be done. It is all a long story, but we ended up deciding to make Stephs room bigger because you could literally fit her bed in and a foot of space at the side and that was it for her room, make the bathroom smaller and put a proper shower in. That way, if I have to wash Ady (God help him) then it will be easy for me and we can also put grab rails if we need, quite easily.

The walls were all simple partition walls, so very simple to move.

Mark had a spare week before he started on a big job and he was happy to crack on with the job and worry about payment later. Our children were in the same class at school and I worked with his wife so there is a lot of trust either way.

The work started on the Monday, and Sue came to visit us on the Thursday I think it was. It was the day they were doing the pipe work, I know that!

The house was in a complete mess cos Stephs room and the bathroom had been cleared out and all the clothes were all over the dining room table along with goodness knows what else scattered everywhere. I was momentarily embarrassed when she turned up actually.

 Poor Sue walked in, sidestepping all the junk into the sitting room to find Ady out for the count, snoring away while there was banging and drilling going on upstairs.

I woke Ady up and we all sat down to go through the finances and benefits ect to see if they could help.

We were half way through our cup of tea when blow me down, water came pissing through the ceiling all over my washing that was on the table. (that’s how I know she came on the day they were doing the pipes). I shouted up to Mark that we were having a bit of a water problem and the next minute, the poor guys (there were two of them and they were both called Mark, apart from dangerous Dave the electrician who drilled through his nail that I had to administer first aid to) had to make a hole in the ceiling to let the water through, so there they were with hammers smashing holes in my ceiling. There was plaster, dust, water and general crap everywhere. All I could do was laugh. I thought bloody hell, here is this poor woman who has driven an hour and a half to try and help us and the whole house is fecking carnage. No point trying to be posh now!!

 Sue said that she was very sure she could give us some help and she needed to go to the committee and ask because it was more than they usually give out in one go.

Well, these people are absolutely BRILLIANT!

They have actually paid for the bathroom to be done. I actually can’t believe it!! How lucky are we !!!

If I ever win the lottery, I will be paying them back, but for now, it is a grant that they gave to us, for free. It doesn’t matter how I write it, I still dont believe it!!

Mark is happy to wait for the money for Stephs room cos he is such a love, and anyway, I did bake him lots of cakes and quiche!

Not only did they give us a grant, Sue has become a bit of a mentor, although she does wonder how I keep smiling and still find things amusing...she doesn’t realise I am mental yet! I think she feels sorry for us actually.

I got Steph a lovely bed and chest of drawers from the British Heart Foundation shop and the YMCA place, painted them up and they are as good as new. I am chuffed to bits with the chest of drawers cos it is one of the old types in the dark wood that are in old peoples houses with the mirror on top. They just dont make them the same these days.

I will tell you more about Sue from Perennial when I tell you about the DWP saga that is about to happen.

But for now, Sue from Perennial, you ROCK and THANK YOU !!!!