Wednesday, 23 January 2013

What A Night!!

I didn’t think I was going to update for a little while cos there wasn’t going to be much happening until our visit to the doctors at the end of the month to reassess Ady’s spot on his head. Well that has been brought forward a week and I will tell you why...

He has been moaning for about a week about a pain in his left side, travelling around to his shoulder blade. He has been coming to me with a tube of voltarol to rub on it although he moans that it isn’t doing much good, but anyway..
I must admit, I hadn’t taken much notice of it or his moans about it.
Now, the thing is, I haven’t been sleeping all that well the last week or so, cos Ady has been up and down and to and fro in the night, either having a wee, or waking me up asking for morphine cos the steroid injections in his ankles and wrists are wearing off already *sigh* (which is why I took not much notice of his side pain cos the feet and wrist pain was more pressing in a way). I know that he is in pain and sometimes keeps quiet about it, trying not to wake me, but the thing is, I hear every huff, puff and sigh. I immediately wake to see if he is OK.

Last night, there I was, all lovely and comfortable in bed, at that stage where you are just drifting off to sleep, when I was suddenly jolted awake with “Oh feck my old boots, this bloody hurts...jesus it is sooo painful”
I shot up and asked what on earth was the matter.
Ady was, by now, sitting on the side of the bed trying to rub his side. “I have got such a sharp stabbing pain in my side and it just wont go. It’s been brewing all evening and now it is much worse”
“Right” I said “I will go and get you some morphine” and off I went downstairs. Ady can’t do the morphine himself cos the lid is on too tight with one of those childproof caps on it that the girls can get off, and also he can’t do the whole syringe thing cos it is too fiddly for his fingers.
By the time I had got downstairs, I had woken right up and decided to make me a coffee. I then heard a slow creak of the stairs and hands sliding down the hand rail so I knew Ady was coming down too. He can’t hurry cos I had taken his bandages off earlier and so he had no support in his ankles so they are weak, wobbly and painful.
I gave him his morphine while I drank my coffee. I thought to myself “Blimey, this pain is a bit close to his heart, I wonder if he is having a heart attack”
Ady said that he had no pain in his jaw, no pain down his left arm and no crushing feeling in his chest. Just this pain on his left side radiating around to his shoulder blade.
So then I thought “Hmm, perhaps he is still having a heart attack and the symptom he is having is actually a symptom that isn’t well known”. So then I decided to google.
Well, google told me that he could either be having kidney stones, gall stones or a heart attack, so then I thought that perhaps I had better ring NHS direct and ask them what they think. Then I thought “Oh bloody hell, as soon as I tell them he has a sharp stabbing pain around his chest area, they are sure to send an ambulance. The girls are asleep in bed, it is one in the morning. I can’t wake them up cos they have school tomorrow and I can’t pack Ady off to the hospital on his own. He simply wouldn’t cope, and anyway, what if he dies in there on his own. He has told me that that is the last thing he wants”
While I was thinking all that, Ady had decided that he was going to sleep downstairs and that the pain had eased a bit and I must go to bed. He will be fine. He was mildly cross and irritable at this point. A bit fed up that it is one woe after another I think.

So, I did as I was told and went off to bed having decided not to ring NHS direct and hopefully, he will make it through the night and I will take him to the doctors in the morning. He was given strict instructions that if things got worse then he was to wake me up. Off I went upstairs to bed.
There I was, just drifting off to sleep again when I heard, c r e a k... g r o a n....shuffle, c r e a k ....g r o a n ..shuffle. Jesus, I thought he was sleeping downstairs and there he was coming upstairs. “What are you up to now” I said “Well, the pain has eased a little bit and I can’t settle downstairs so I will just lie here on top of the duvet so you aren’t worrying about me dying downstairs, I can die next to you”
“Lovely” I thought “Now I can’t cocoon myself in the duvet cos he is lying on top of it and I can’t even snatch it away from him like I usually do”
I laid there for a while wondering if I should ring NHS direct or what exactly I should do and should I be worried at all or perhaps I was worrying unduly. I wasn’t totally convinced he was having a heart attack but then again, I wouldn’t be surprised if he was.
The last thing I heard was the sound of Ady snoring. I drifted off to sleep too.
I was woken about 7am with Steph asking me to do her a letter for her dance teacher about wearing track bottoms for dance instead of leggings or something, so I got up, checked Ady was still breathing and went downstairs to sort the girls out for school. They were in a great mood and we had a pleasant half hour together. I thought it best not to ruin it for them and tell them about Ady in the night, so I kept quiet and they went off to school quite happily.

I made an appointment at the doctors for that morning and before long, Ady came hobbling downstairs “Morning darling, I made it through the night!”
“Excellent” I said “Let’s get you bandages done and get you off to the doctors”
Ady and I did wonder if our poor GP, who is still great, looks down his list of patients in the morning. Notices Adys name and thinks to himself “Bloody hell, not him again, what does he want THIS time” then decided that we wouldn’t blame the poor bloke if he did actually think that!
Dr K asked Ady lots of questions and checked his wee and ruled out kidney stones. He also ruled out anything else nasty and said that he , well, sort of, erm, has a pain and to take morphine if he needs it. Of course, should it get worse, go back and see him.
While we were there, he had a look at Ady’s spot on his head and thought it didn’t look quite so ulcerated around the edges as it did a few weeks ago, so he is now putting antibiotic cream on that and going back again in a month to see what it is up to.... we would much rather have an infected spot that a cancerous one any day!

So that’s it really, Ady went from having a heart attack to having to man up!

Oh and I have told Ady that when he stops worrying about what other people are saying and thinking about him and accepts the situation he finds himself in, realises his new limitations and stops fighting them, he has won half the battle and his guilt and anxiety levels will drop....I hope!!

Next, I will write about the DWP stopping our payments and the letter I got from the girls school...blooming nightmare lol

Sunday, 20 January 2013

Inside Ady's Mind.

It’s early on Sunday morning and there is a bit of snow falling outside. I love a bit of snow I do.
I’ve put a joint of beef in the slow cooker ready for dinner this evening and I am chuffed with myself cos I washed and ironed all the girls’ school clothes for tomorrow, yesterday. So today will be spent mostly swanning around!

I am going to try and write about what is going on inside Ady’s brain. It is quite a muddle in there so this little blog might be a muddle too while I try and unravel everything.
Ady and the girls are all sleeping at the mo. I doubt any of them will get up until about lunchtime! But that is nice cos it gives me lots of peace and quiet and thinking time.

Right, back to Ady....
His mind is in a bloody mess, frankly. We have laughed and joked our way along our journey, taking the piss wherever we go. He has been very upfront and honest about all aspects of his symptoms and side effects, sometimes to the point of too much information for some people! Especially when he does things like telling friends he is just off to the loo to straighten his piss pad up. But, it has made him and me, much more approachable, and these days, people don’t hesitate to ask how he is, which is nice.
The thing that Ady doesn’t discuss so openly with others is the amount of woe and angst he is going through. He talks to me all the time about it when we are on our own. He has spoken to our GP about it, who has offered him counselling, but Ady isn’t that keen. He worries that they might say something that conflicts with what I have said and leave him in more turmoil than before. I completely understand that although I have suggested to him that he keeps it in mind and someone different to talk to might help one day.
In a way, the cancer has been a walk in the park compared to his arthritic pain. Apart from the operations, the cancer has never been painful, but now he is in constant pain and it is getting him down, a lot. Poor Ady is losing his spark.
Last year, when he was declared cancer free and his arthritis flared, he really struggled with that. He felt OK telling people he had cancer, they understood why he wasn’t working, and Ady was fairly OK with not being able to work, but now, he has ‘just arthritis’. He feels like a fraud and that he should work through the pain and get back to work.
He is absolutely riddled with guilt about the amount of time he sleeps (which is a couple of hours in the morning and the same in the afternoon) and tortures himself with constantly thinking he is being lazy and giving up.
He watches the news about shirkers, and thinks he is one of them and used to often say, “I must get on, and get back to work”
This whole government and media attack on ‘workers’ and ‘shirkers’ is doing the likes of Ady no good at all. I totally understand that the welfare system needs a shake up. I agree in principle with what they are doing but the way they are going about it is very worrying indeed.
Ady is constantly worried that he will have to go for an ATOS medical and they will tell him he is fit for work and although he goes on about getting back to work, he knows really, that there is no way he can. Just pottering around the house playing with his chickens and sorting out the firewood leaves him reaching for the morphine bottle!

One morning, I was up very early and was going off to the Saturday market to get meat and veg, then coming home, put that away, pop round to get Brian up and then going on a 20 minute drive to get betty in the bath before coming back to get Steph up to take her to drama, picking her up again and round to Brian’s to do his lunch visit.
Ady had got up for one of his many wees and had come downstairs to have a drink with me.
He said that he feels terribly guilty that I am going off to work when it should be him. The poor bloke could hardly keep his eyes open and just had to go back to bed. He said he lays there worrying that I am holding the fort and then he worries that I will get fed up with it and leave and then he worries that I might have a accident and then what would he do, how would he manage on his own?
He thinks this every time I go out of the door. Christ, how bloody tiring!
He constantly worried that people are judging him about his arthritis and that perhaps they think he is milking it, just to stay off work. Of course, those that know him well know that it is far from the truth. He worries that on a good day, he walks to the shops to get hay for his chickens and people will be watching him and gossiping that there is nothing wrong with him, and then get reported for being a shirker.
He worries about how much morphine he is taking and he worries about all the other medication he is on. He worries that he is letting everyone down. He mainly worries that he is being a lazy git.
His worries are eating away at him.

What he forgets, is that he has been through two cancers and at the end of the month, he will probably be diagnosed with a third (although not as serious but it is still another bloody cancer). He has had two major surgeries 12 months apart. He also has his underactive thyroid, high blood pressure, diabetes, anxiety and OCD mixed in with crippling psoriatic arthritis. His ankle joints are just rubbing bone on bone with lots of heat and inflammation all over his feet which has now spread to both of his heels and radiating up the backs of his legs. Oh, and on top of that, he pisses himself and is still suffering from the side effects of his radiotherapy.
Every morning, I have to bandage his feet. Without them, when he walks, they just collapse and the pain is crippling. I haven’t even mentioned about the pain in his lower back and the top of his shoulders and his left wrist...and the silly bugger is worrying about what other people think and getting back to work *rolls eyes*

I have noticed that Ady is losing his spark. The pain is very draining. When he is in pain, it makes him that bit more depressed and anxious and when he takes the morphine on top of his other pain medications, it makes him feel bad that he is becoming too reliant on them. What do you do ??
Although we have always joked our way through the day, I now follow Ady’s lead and only take the piss when he does. Sometimes, he just isn’t in the mood.
We do a lot of talking and I do a lot of listening and give lots of reassurance. I dont know what else there is I can do to make things better for him. I really really wish that there was something, but I spose I just need to ‘be there’.

Sunday, 13 January 2013

Warts and Spots

A few months ago, I was sitting down with my legs crossed. As I looked down, I noticed a spot on my leg which has never been there before. So, like you do, I picked it, and it bled, like it would, and I thought to myself, “There, that’s got rid of that”
About a week later, I noticed that it had come back and was sticking out a bit and was a bit shiny, I thought.
I decided that with our luck, it is better to be safe than sorry and I ought to get our GP to look at it. So I shaved my legs, pumiced my feet and trimmed my nails (cos the spot was at the bottom of my leg) and off I went to my appointment I had booked.
He had a good peer at it with his measuring magnifying glass thing and said “Hmmm, that looks a bit like a wart to me”
“A bloody wart??” I said “Witches get warts” I glared. “Are you sure? Are you sure it isn’t skin cancer?”
“No, I really dont think it is cancer Emma” He said “Have a look through my magnifying glass and you can see all the black spot things in the middle, indicating a wart”
There I was, sat on the chair with my legs crossed, trying to bend down with his magnifying glass thing to see for myself and my fecking stomach was in the way so I couldn’t get close up to it, so I took his word for it and blamed my inabilities on my back.
I must start that diet soon.
He told me to come back in a month and he would have another look at it, to make very sure.
So the next month, I went back. I walked in and said “Ive come to see if I am a witch”
I think he sometimes wonders if I am a bit mental to be honest but I can’t help it.
He had another look at my spot and said ”Yes, I am afraid so”
Jesus Christ!!
He gave me some acid stuff to put on it so I went home and got my homeopathy kit out and treated it myself. I thought to myself “Emma, if you are going to be a witch, you might as well behave like one”
My friends take the piss out of my homeopathy, but actually, my wart has gone now so there!...without acid!

The week in between Christmas and New Year, Ady started feeling a bit unwell. Nothing major but if you are on Methotrexate, you have to be careful with infections cos you have a reduced immune system, so I took Ady to the doctors, firstly, to make sure he was OK and his chest was clear and secondly, hoping that we could have some antibiotics on standby, just in case, what with it being new year and everything and having on call doctors and stuff.
Luckily, Ady’s chest was clear and DrK did give us a prescription for just in case. He said to ring if we cashed it in to let him know.
Just before we left, we asked in passing if he wouldn’t mind having a look at a spot on Ady’s head cos it didn’t seem to be healing and had been there a month or two.
He had a look and got his magnifying measury thing out.
“Hmm, that looks like a rogue ulcer to me. I dont want to worry you, but I need to see that in a month.”
So, off we went home and I googled rogue ulcers and realised that it is a basal cell carcinoma.
We dont know for definite yet and we are going back at the end of the month to get it checked again. Since then, another one has come up at the back of his neck, but our GP seems pretty sure..*sigh*

Isn’t it bloody typical. I shatter my ankle into smithereens, and I am made to hobble about on it in excruciating pain and told that it isn’t broken and I am being a girl...get a grip.
Ady then decides that his arthritis is eating away at his ankle joints, so he hobbles about and everyone is like “There there Ady, you poor thing, here, have some morphine for the pain, have some injections”

I go to the doctor about my skin cancer to be told it is just a wart, and Ady goes about a spot, to be told it is probably skin cancer.
He always has to go one better than me...well, my next ailment, I am keeping quiet from him!!

I am determined that 2013 is going to be a good year for us, but it might be a struggle..

We are Emma, Ady, Charlotte and Stephanie and we live at
Cancerous House,
FFS Lane,

Injection Time.

A couple of weeks ago, we went for injection lessons with Lisa, our rheumy nurse. She is very lovely.
Hang on, I just going to put my lamp on. I found it when I tidied my desk the other day...forgot I had it actually..that’s better, I can see now..

So, there was a small group of us all having lessons and we sat in a semi circle. There was a young lady, full of make up looking very glam with high heels and there was a husband and wife couple, about 10/15 years older than us.
I’m not sure what type of arthritis the lady had, but the chap with the wife had rheumatoid arthritis...I know that cos the wife went on and on and on.....and on and on, about all his ailments and about how he is the most unwell person on the planet and how the doctors wont listen and he is on too many heart tablets and she is sure the methotrexate is giving him stomach troubles and the heart specialist thinks he should have one type of treatment and the other specialist thinks he should have something slightly different and how she has to look after him cos he is useless yadda yadda..Both me and Ady felt really sorry for the poor bloke, who just sat there quietly. I wasn’t surprised people didn’t listen to her if that was the way she carried on!
She was having nothing to do with the injections and thought the whole thing a waste of time...every thing poor Lisa said, she interrupted and questioned and then commented under her breath about how silly the whole thing was....and there was me, thinking I could be a gobby irritating hag...I have realised how flipping lovely I am now :p
So, there we were all sitting in our semi circle and Lisa started her lesson. She had her silver trolley with all the bits on it and told us how to store the methotrexate  properly and how toxic it is while handing out a big yellow sharps tub with “DANGEROUS, DESTROY BY INCINERATION”. “Infectious substances” written all over it...I thought fecking hell, this is some serious shit!
She explained that Methotrexate is a cytotoxic drug, meaning that is changes cells or’s quite serious I think cos she looked serious when she was saying about it.
She then gave us all our prescriptions of methotrexate in needles..well it was in the syringe bit and you have to attach the needle yourself.
You get six weeks supply and two weeks before you run out, you have to ring a particular number to order some more. They check your blood results and then if all is OK, they order you another prescription which you have to go to the hospital to pick up. Not quite like picking it up from the your local chemist, but hey ho. The wife of the poor man went mental that she would have to come to the hospital to get it. That was another tick in her book about why the whole thing was a faff!

Ady and I had agreed that I would do the injection and take charge of the ordering and collection cos he would find the whole thing way too confusing and would have trouble with the needles and attaching them and a whole host of other stuff.
Lisa started showing us how to prepare the equipment  and talked about cleanliness. After washing her hands, she started cleaning the trolley top..thoroughly, to make a point I think.
Ady will be having his injection on Wednesdays and he immediately said “Yes, you had better do the injections woman cos what with my OCD, I will have to start the cleaning regime on Monday” I miled sweetly at him thinking “cleaning? Christ,I am going to just stick the needle in and be done with it”

Once Lisa had gone though the whole procedure and connecting the needle onto the syringe and all that, it was time to do the injection. Well, I must have looked far too happy to do it when I leapt up from my chair, dragging Ady along with me, cos they all chuckled and commented on it. Oops!
Sticking a needle in someone is far easier than I thought. I expected there to be a bit of skin resistance, but there wasn’t. It just went straight in..easy as that!
So what I have to do, is clean my surface and wash my, I have to wash my hands and then clean the surface...that’s right. Then get the needle,the methotrexate, my gloves and a bit of cotton wool and put it on my cleaned surface.
Check the date of the methotrexate so it hasn’t run out and make sure it is clear and yellow with no bits in it. Get the needle and take the tip off the syringe bit and join the needle onto the syringe. Then I pinch a bit of fat (Ady’s stomach has plenty) and stick the needle in. Let go of the pinched bit and then squidge the methotrexate in and count to six, slowly. Take the needle out and give Ady the cotton wool to put where I stabbed him.
You have to count to six and squidge the stuff in slowly because it is quite oily and needs time to sink into the tissue. If you are too quick, it all comes spurting back out!
Once I have done that, I have to put the needle and my gloves into the “DANGER” tub and the rest goes in the bin...I think that was what she said....anyway, not to will all be OK!

So the next Wednesday, it was time for me to do the injection at home. Lisa suggested that it be done in the evening so he can sleep through the worst of the side effects.
So, I got all my stuff ready and my gloves on and came into Ady with my tray. Charlotte was there so I got her to take some pictures, like you do. The wall lights were on in the sitting room and they are a bit dim, only 20 watt or something, so I turned the main light on but it didn’t work.
I thought “Oh FFS, I am not changing the bulb now, I have got my gloves on and I am all clean. I can see what I am doing alright, no worries”
I have to say, I did the injection perfectly..I didn’t feel a thing!
Charlotte took some pictures and off she went upstairs. She called down to say the lights upstairs weren’t working. I thought “Blimey, we don’t have enough bulbs for upstairs too”
I went into the kitchen to find all the sockets weren’t working either!
Ady and I looked at the fuse board thingy and found that one of the big switches had flipped off and wouldn’t go back on. Ady, realising that we had no freezer, fridge, kettle or lights went into a melt down and wanted to know exactly WHO is an electrician and that we must ring our builder NOW!!
I told him that we cant go ringing people in the evening like that and that it isn’t a problem, we can all have a torch. The freezer will last until the next day and we can boil a saucepan for a hot drink.
Poor Ady was going quite pale...I wasn’t sure if it was the side effects of the injection or the panic of the buggered electrics.
I did remember that when we had the bathroom done, Dangerous Dave  the electrician gave me his mobile number and said to call him any time. So I did, and he didn’t answer.
Ady was in more of a panic by this time and was getting all the extension leads to connect to the working sockets in the dining room to run upstairs. Dear God !!
I couldn’t ring our builder cos I knew he was in bed with man flu. Then, thank the Lord, Dangerous Dave rang back and went through exactly what to do. So I switched all the fuse things off and then turned them all on one by one. Hey presto they all worked!!
Dangerous Dave told me that I had used too many things all at once. I thought well, I did have the dishwasher, washing machine, tumble dryer, television in the kitchen, cooker, slow cooker and microwave going pretty much all the hoover...I was trying to be the new organised me for 2013...perhaps that wasn’t such a good idea after all.

We are Emma, Ady, Charlotte and Stephanie and we live at
<0.1 PSA Lane,


Now it is 2013, I am going to be REALLY organised.
I sort of think that this year is going to be quite settled...hopefully, and that we are going to settle into our ‘new normal’..well, I hope so long as the people at the DWP don’t decide that Ady is suddenly fit for work and they stop the benefits and then we have to appeal and that goes on for months on end, which the whole thing could well do as I can’t remember if I told you that they want to do a review to see if he is better or not. Well, it is obvious that he is completely unfit for work, but let’s see.
I had to fill out another ESA form and have it sent back by 11th December last year...well Sue from Perennial did actually, when she came to see us...poor woman, I bet she wishes I never rang that day lol. She is great and I wouldn’t be without her now!
Anyway, so hopefully, the decision maker will simply agree that he is not fit for work and keep him in the support group of ESA. If she disagrees or is undecided, then we have to go for a medical with ATOS (gawd help us) and they are months behind with them, so that won’t be until the spring, and then they usually decide even people with no arms and no legs are fit for work, so then we would have to appeal, which will take months too...bloody hell, it could possibly be quite a shit year actually thinking about it, but, let’s not borrow trouble until it comes, eh, and so far, I am planning on it being a settled and organised year.

Financially wise, I am very chuffed with myself!
My chappy I look after in the community loves beetroot from a jar...lots of it, so I saved about five of them.
I have labelled one ‘food’, one ‘petrol and repairs’, one ‘clothes’ one ‘Christmas and Birthdays’ and of course you have to have a ‘misc’ one. Each week, I draw the money from the bank and put certain amounts in each.
I am very strict with the food and petrol ones cos you can easily over spend with those, so whatever is in the jars is what there is to spend for the week and no more. The rest of the money stays in the bank to pay the bills.
I have decided not to use credit cards and just use cash so that when it is gone it is gone.
It’s a good thing for the girls to learn as well. They can see the Christmas/Birthdays jar building up and they are learning that if you can’t afford it then you don’t have it until you have saved. Borrowing money is simply not the way to go about things, especially when you have to do strict accounting with very little!
I have even tidied my desk and nearly done all of my paperwork too, so I am going to do that as the postman brings it each day...hopefully.
And I am going to do this blog weekly so I don’t have so much to catch up on and forget half of what I want to say!

There are loads of bits and pieces that I forget to tell you, cos I have to sit quietly while I am writing and I dont often get the opportunity for that, but my new organised self is going to make time!
Bloody hell, I am like this every flipping year and say the same old crap...*sigh*

Right, in the next blogette, I am going to tell you about Ady’s injections and how they are going. I also want to do one about Ady’s brain and what is going on in there, but that one might take me a while cos that one will need lots of composing...there’s a lot going on in there... and I might even get Ady to sit with me while I write it...yep, could take a while...
I also want to tell you about our visit to our lovely GP between Christmas and the New year....he didn’t want to worry us, but we might have another cancer on the go...these days it’s like talking about the price of eggs and bacon, no big deal, and anyway, I would have said about it earlier, if I had realised what a rogue ulcer on the scalp was.

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.....