Saturday, 29 December 2012

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!! 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 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 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.....

Saturday, 8 December 2012

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 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 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?