But you look so well!

Yesterday I rang the pain management clinic to change the time of my appointment. They told me that the appointment had already been cancelled, which of course surprised me. I asked why to be told that it was ‘because you do not need it any longer’.

My first reaction was to argue, but that would have got me nowhere and so I asked if the lady possibly had the number for the pain clinic secretary. She gave me the number and I rang only to get an answer phone. I do not like them and did not leave a number. I tried about 2 or 3 times over the course of the morning and then gave in and left an answer phone message.

I had to go the anti-coagulation clinic at 1:30 but as this one was near home we did not need to leave home until about 1:15 so I was able to put some time into getting my course work done. I also tried to get some help with the housework, but our daughter decided to vacuum the stairs which was what I told one of our sons to do. He then ended up tidying up, but as most of the mess was hers I ended up having to tell him what to do with almost each thing. I often wonder if they do it to stop us asking for help, but I know that his not true, because they can be so helpful.

When we got to the hospital I was surprised to see so many parking places. There is a new community hospital that has opened recently and so they have moved stuff over there, making the parking at the other hospital so much easier. I assume that eventually they will move everything there and that Highwood will close. There is a lot of prime building land there.

I went in and was taken straight through for the INR test, thumb prick to test the blood to see if the clotting is at the right level. I was the youngest person there by about 30 years. The nurse looked at the result and asked if I was taking all my meds, and my injections. Of course I am, was the reply, so a result of 0.9 was a surprise. They are aiming for 2-3! That means that I need to keep injecting for another week and the warfarin has been increased by 1mg a day. Another appointment was booked for next Monday, looks like this is a regular thing for me now. I made the appointment for 2:30 so that I can meet Elizabeth in town after school, and she can have a lift home.

I had to go back into town again at 4 to pick up our second son from his part time job. I cannot wait for next week when Rob can drive again, after his appendix, so that he can take over the family taxi position.

When we got home I was shattered but had the idea of ringing the gp surgery to see if they knew why the pain clinic appointment had been cancelled. The answer was that they did not.

By this time I was shattered, so I got help to make a shepherd’s pie. I spent the evening on the computer and watching TV, too tired to do anything else.

Today I was impatient and rang the pain clinic to see if I could find out what was going on. The phone was answered, much to my surprise and the lady I spoke to knew who I was as she was trying to find out what had happened to my appointment. It appears that someone else wanted to cancel a clinic and somehow mine was cancelled instead. She was very pleasant and apologetic about it, but sadly the next available clinic appointment is not until 24^th November, so I will have to wait until then.

I then went to the hairdressers for a cut and blow dry. I have been going for about 10 months now as a model; it is great because the salon I go to do not charge for models and you get a really good cut. But as of January they are going to start charging. I have agreed to have my hair coloured in a couple of weeks, but have now found out that they charge about £15 for that, so I am not sure if I will get it done. The only reason I agreed was that they asked if I would.

After that Michael and I did a bit of food shopping, and paid some bills and came home.

That was enough to leave me so tired I fell asleep whilst I was studying.

My legs were aching a bit this afternoon so I took off my socks which were leaving a mark. This evening I noticed that my legs were still swollen and now the slippers and loose socks have left big dent marks where the oedema is.

It has made me upset because it seems as if there is always something wrong. I am so tired, and will now have to make an appointment to see the gp as I am already on diuretics. It just makes me wonder what will go wrong next.

I finally got the letter for the scan. It has not been easy waiting as I am impatient at the best of times and to have to wait for an appointment after being told that you have a mass is hard enough but for that scan to take three weeks to get. It will be like the ultrasounds that I had when I was pregnant. They say I must drink 1.5 pints of water and have a full bladder. They in turn aim to do the scan on time. I wonder how often they have women have to go to the loo and then start drinking and waiting again.

It does mean that I will have to change my pain clinic appointment as they are about 20 miles apart and only 1.5 hours between them. I cannot see me managing to get to both.

This next week is half term and I was hoping to spend some time with family. Monday (tomorrow) I have an appointment at anti-coagulation clinic, Tuesday I have a haircut, Thursday I have the two different appointments. So that leaves Wednesday or Friday. It will have to be Friday as I have no money to spare until then. I also have my first assignment due in on Friday. My second son is in the same position as he is doing the same course, and it looks as if his computer died today. So he will have to see if he can get some help from the OU to get a new computer. It is that or he will have to share mine. He likes being up late so I can see him on the night shift. Seriously though he and our daughter will have to be trying to get their work done on my computer whilst I am at hospital appointments.

The credit crunch is hitting us now. Our costs are higher because of Robert and me. If we do not keep the house warm we both are in more pain. I am often here wrapped in a blanket because I am trying to keep myself warm. Trying to keep the heating off to save money to make ends meet.  Food is more expensive when you have a disability. It is hard to do simple things like peeling potatoes, and whilst our daughter is good at helping with the cooking, she often has homework to do. So I end up buying ready prepared veggies. Then there are the nights where you end up buying ready meals because again you have no energy or desire to cook. I am not able to shop often and so I send others out. When you are cooking and you do the shopping you can change what you are going to cook and buy other things. But when someone else does your shopping you have to get what is on the list.

To be honest I have decided to stop worrying about the bills. It does not help get them paid and just makes me feel bad.

I got a letter on Friday from the DWP about my DLA application. They have still not made a decision about if I qualify for DLA and if so how much. I know that if I am successful then the money will be back dated. If not it will be another case of tribunal and another application. This time if I have to take my case to tribunal I will go there myself so that they can see what I am like. It is so offensive when you see articles in the media about how easy it is to get benefits and how many people who are not disabled get them. I did not ask to be like this, I do not enjoy being in constant pain, yet I have to fight for the money.  If we were not in need of it I would give up because it is stressful and upsetting. It really feels like you are begging, but I am not I am trying to get the help I need.

Robert got a letter from DWP on Saturday. He was awarded IS for two years and that was 22 months ago so he had a form to fill in about it. I say a form it was a book and much to his horror I made him do it there and then. A friend of ours said to me about a year ago that when he has forms to fill in he takes the attitude that he is getting paid to do it. So for example if this form gives Robert £80 per week that is just over £4,000 per year. So if the form takes an hour you in effect were paid £4,000 for filling it in. Since I have looked at it that way I have been better at forms.

Robert got the form filled in and Michael posted it Saturday. So that is one less thing to think about.

What a weekend.

Robert finally had his surgery on Sunday morning. They would not do it Friday as he is allergic to anaesthetic, they had planned to do it Saturday, but the doctors ran out of theatre time, so they finally did it Sunday. He was looked after well by the nurses, and was home again Monday afternoon. We picked him up about 1:30 would have been earlier but the hospital seems to only have lifts and they stopped working for a while.

On the way out we visited our friend who is in there, she had not been well in the morning and so we only stayed a few minutes. Robert wanted to pass on his TV and phone credit. They have a system at the hospital where you have a TV and phone by your bed. It costs £3.50 to watch TV and that lasts for 24 hours whether you watch it all the time or just for a few minutes. But they cheat because the only card you can buy is £5. I am sure that they rely on people not using up all the credit. The phone is 10p a min to phone out and anyone calling you pays 20p a min from a BT line. It is all money making.

By the time I got home I was shattered and instead of watching University challenge on TV I slept most of the evening on the sofa.  Then I slept most of the night, and when our daughter had gone to school I slept another couple of hours. I still feel so tired, it must be that now I have relaxed the past few days have caught up with me. Ian, our son who has an autoimmune condition, also did the same thing, in that he did not feel good this morning and so he went back to bed for more sleep. Just proves what I have said for a while now that stress makes him feel worse.

My stomach is a mass of bruises again. The Clexane for some reason is bruising the last few days, so my stomach is sore to touch. I am just waiting for the appointment at the hospital so that I can change over to tablets. That would be easier because I keep forgetting the injection the last few days, but if I had the tablets in my box along with all the other tablets I would not forget. Plus the fact that it is not nice sticking needles in yourself.

Robert has just gone out with his brother. The letter he came home with says that he should get fresh air and exercise, although the exercise bit is all Ian’s because Robert is in a wheelchair. The car has a problem so we are not able to drive it. The decorator came today to put up a bit of wallpaper, and he noticed that there is a bulge on the tyre wall. So I am waiting for a phone call from the garage to say if they can sort it out or if we have to and if so where we must take it.

I am also waiting for a phone call back from the doctor. I saw him two weeks ago about the mass that was found on the CAT scan and so far I have not heard about when I can see a specialist. So today I rang the GP surgery to ask about it. Whilst the Ca-125 result came back within normal range I still would rather get rid of whatever it is in there. Or at least know for sure that there is nothing to worry about. It is the waiting that is not good, I want to know and I want to know now. So I rang the surgery and they will talk to the doctor and ring me back later.

Now all I need to do is to catch up on my study, at least I am only 2 weeks behind, better than this morning, but still bad as I am only in week 3!! It has been hard to get my brain in focus for this course. Ian is doing the same course and he has already started the first assignment which is due in the end of the month. So I had better get on and catch up. No inspiration at the moment though, now if it were a story about sleeping, or stress I would be full of ideas.

Today our eldest son awoke with bad pain in his stomach. It was just where the appendix is, but of course you tell yourself that it cannot be that and that he over did the pizza lunch yesterday. We took him to the GP and he examined Rob and said appendicitis you need to go to the local hospital. We asked for help with transport, because although I had driven him to the gp the hospital is at least 20 mins and Rob had suffered in the car just getting the two minutes to our gp surgery.

My husband went in the ambulance with Robert and I took the car, went home and changed and picked up a couple of books. On the way to the hospital I stopped to get petrol and sandwiches/drink. I have not driven further than a couple of miles now for months. So to drive the 8 miles alone to the hospital was daunting. Also the journey meant a very busy roundabout where two A roads cross, and then the ring road around a busy large town centre. I managed it of course, although I did wonder at one stage if I should stop because I was hurting and also feeling so tired.

Not only did I make it but I got there about the same time as the ambulance.

Robert spent about 4 hours in A&E. they did blood tests, BP, urine and an x-ray. Finally sending him up to the ward. That is where he still is 7 hours later and it looks as if the surgery will not happen overnight.

I do not know how I managed to drive there, stay at the hospital for 7 hours and then drive home, that was in the dark, but I did have my husband with me. Funny how things look so different in the dark and how cars seem so much closer when it is dark.

This evening I have had a long hot bath and my back is hurting really badly now. But I know no matter what I will be going back to the hospital tomorrow, as despite the fact that he is 24 our son has had a lot of time in hospital and we have always been there with him. But now he is a man he has to cope, and so do I.

The biggest problem I have now is that it is after midnight and I am shattered but I cannot sleep, mainly because I hurt.

I had to sleep on the sofa last night because the decorators had not finished our bedroom. It was a good nights sleep, as it always is if I sleep downstairs. I woke up for a while but was able to get my own drink and go to the loo. I can only use the one downstairs comfortably so when I get up in the night I have to go downstairs.

After a good nights sleep I went for a shower. Usually I make sure that my husband is around, but as we were expecting the decorator here I had a shower whilst he was doing a bit of shopping. That was a mistake as I fell over in the shower. It is the first time it has happened, and I am aching from it now. I could not call my sons, to help me, one is disabled and the other one would have been even more embarrassed than I would have been. So I had to sort myself out.

It is at times like the one in the bathroom when it hits you that your life has changed and that things that we used to take for granted are not so easy.

We also have to sort out our washing machine, the one we have is a large drum one, and with six in the house we were doing so many loads. But yesterday the lights all came on and the only wash that the machine will seem to do is a 60 cotton cycle, so we need to sort that out now. But of course we do not have any money spare to get a new machine. The local repair place said that it would be too expensive to repair as when that happens it is a big job.

I should be studying this morning but it is just not happening.

I have some software for my computer so that I can speak and it will type what I say. Sounds good BUT, I cannot get it to work.

I had a good go again on Monday when Michael was upstairs studying and I had the sitting room to myself. The thing would not type what I was saying unless I held the microphone up by my mouth. Well that just makes my arm ache more than typing. Apparently having a USB microphone will make it work better, but I am not about to go out and buy another mic.

I got the results of my blood test and it was within normal ranges. What happens next I do not know, but I assume the doctor will tell me. I know that I will have to go and see a specialist so that they can find out what the mass is. But they do not seem to be in any hurry to get that done. Maybe I should ring the surgery, well maybe tomorrow. But today I will try and keep quiet and easy going.

Robert, our son did not go to pottery group today. He got up late and then by the time he had eaten and got ready he felt that he was going to miss half the class so it was not worth going. Our next son is working for a few hours. He is doing overtime, should really be getting some study done. But he is so laid back.

Last night my daughter was over the moon, SAT tests have been stopped and they will not have to do them. She has not sussed yet that they will have to do some sort of test, if only to work out which set she needs to be in for GCSE’s next year.

I am going to have a lie down now. My neck, back and arms are aching, which I assume is from where I fell in the shower. I should have used the bath seat that we were given, but I don’t want to admit that I need it. This of course is silly because as today showed I do need it.

I also had trouble getting dressed today, could not get my leg in my trousers. It is becoming more difficult to stand on one leg whilst I put the other one in my jeans. I know that the answer is to sit down and do it, but habits die hard.

On Tuesday when I went to the doctor I forgot that I had a blue badge so that I could park the car and ended up going up and down the road looking for a parking space, then parking a long way from the surgery. So I have been using the parking permit a lot so that I can remember that I have it.

On Thursday my second son went to the doctors to get a asthma inhaler. He used to have allergic asthma when he was little but has not had any problems for years. Recently though he has had a lot of problems. So when he saw the nurse for his blood test he asked about a new inhaler.  She booked the appointment for the gp and suggested Thursday as he would get the blood test results.

He went with his other two brothers as they were all going to Pizza Hut, I mean Pasta Hut oops. The gp had the blood test results and it seems that our son probably has Addison’s disease. This is yet another auto immune problem where the adrenal glands on the kidneys do not work properly. He has some of the symptoms, although not all. So now he must see an endocrinologist in order to clarify if this is what is causing the fatigue and all the other problems he has.

My son does not seem bothered about it, he says at least if that is what the problem is then he will be able to take steroids and feel better. But being a 21 year old he has not bothered to organise the appointment yet. It is not easy when you have such a laid back offspring and you are a bit of a control freak. It is all too easy to take over and sort it out for him, but if he has got something like this he needs to learn to organise himself. For example we are both studying the same course. He has not opened the books yet and so is a week behind. I am not up to date, but at least I have started.

For me the week has been a rollercoaster. My energy levels have drooped as the week has gone on. I did try going wheat free for a week and last week as the second week I tried eating normally again. So is the energy problem due to the wheat or is it due to the fact that it has been a pig of a week?

I had the blood test done on Friday, and as with Monday they found the vein first time. Only problem was that when she had finished despite me saying that I am on blood thinners the blood lady kept taking the cotton wool off of my arm to see if it had stopped bleeding. So of course I now have a bruise.

After the blood test we went and did a bit of shopping and sorted out prescriptions for my son and for me.

Today has been a quiet day as well. Shopping at the local supermarket was exhausting for me. Then as we were out we dropped off a disk for a printer that I gave to someone else. Whilst there of course my husband had a bit of a chat whilst I sat in the car because I was so exhausted.

The rest of the day has been spent sitting around watching TV and reading.

Today my 13 year old daughter cooked the tea. She has never cooked the whole meal before but with me giving her advice she cooked a moussaka, no recipe just made it up ourselves.

She did really well and everyone cleaned their plates, so maybe I should let her do it more often. It would make my life easier as cooking is very painful.

Yesterday I had to move the blog, due to a problem with where I had put it. So I spent time moving the posts and am now up to date.

Monday I went to London for a hospital appointment. We had a good journey up there, unlike normal I was very laid back about timing and it did look as if for the first time ever I was going to be late. But we got there on time. I must admit it irritates me that there is a notice at the clinic that says if you are more than 30 minutes late then they may not see you, however last time I was there I had to wait 2.5 hours to see the doctor.

This time was much quicker and I was in almost on time, give or take 10 mins.

Before seeing the doctor I had my blood pressure done as well as weight and urine sample. The weight we will not talk about, in my dreams I am slim, in real life it is a battle that I fight everday and one I lose every day.

My bp was wonderful 114/82 I cannot remember the last time it was that level. I assume that the clexane (blood thinner) is making a difference for that as well as other things.

We had a lovely chat with a couple who were also waiting. Next time I see someone wearing a cross with a red sash draped across it we will know that they are a deacon in the RC Church.

The doctor got straight to the point and told us that my kidney scan showed that the kidneys were all ok and there were no problems. Then you hear the but… the scan had shown an adnexal mass. Well what does that mean? To my daughter it would be when the whole school goes to the cathedral for assembly. But of course the word mass means so many things. The rest of the appointment went well. They are putting me on warfarin, suggested  I see a local rheumatologist for the arthritis and also thought that it would be a good idea for them to see one of our sons when they saw a list of his symptons!

After seeing the doctor I went for the usual blood test. You never get seen without haivng a blood test. On the way there we saw the couple who we had been chatting with before. I asked her how it went with the doctor as she was worried about some symptoms. She said that it was ok. Of course she was shocked when I told her what I had been told. But then she said something that really touched me. We are not Catholics, but when she said that she was intending to go to Westminster Cathedral after the appointment and that she would like to light a candle for me, I was moved.

The blood test was good this time. Usually I have a problem where they cannot find a vein and they prod and poke with the needle leaving me with a nasty bruise. This time she got the vein first time and the blood flowed just like it does when my husband has a blood test. It made me realise how long this problem with my blood has been going on.

WE came straight home after that. I was tired and I think that we were both a bit shocked. It seems like every time I go to the hospital they find something else.

I decided that I did not want to talk to anyone about the mass, I did not want to worry anyone and also I did not feel up to answering questions.

When we got back to the station, our eldest son met us I went home and my husband went shopping. Whilst at home alone I rang my brother and told him the news. Not sure why I decided that I would tell him, but it seemed the right thing to do.

Mum skyped me and so I told her stuff but kept the news about the mass to myself.

Later that evening I felt that it was wrong to keep my parents in the dark. So I rang dad and told him knowing that mum would not be at home yet. It felt right that dad should tell her and not me on the phone. Of course within a few minutes of her being home she was on the phone to me. She knew I was keeping something from her and was waiting to be told.

Yesterday I went to the GP to sort out the things that need to be organised. He gave me a form for a blood test Ca125 looking for cancer indicators in the blood. IT seems odd to be writing that word in relationship to me. He also is organising the scans, the blood thinning clinic appointment. The arthritis clinic we need to go back in a month because a new community hosptial has opened in our town and they have not said which specialist will be doing an arthritis clinic there. Our gp is good and he is willing to listen. After all GP’s don’t see many people with lupus or APS so he will ask me questions. In fact before we went to London he asked me to ask the specialist a question for him.

I had a lovely rest of the day. I visited someone I have not seen for years and we had a long chat. She is off work sick as she has chrons disease and also she has back trouble and fibromyalgia. So we were able to share experiences.

I was so tired when I got back, but I remembered that I needed to ring for a blood test. The answer phone message I got was rude. The clinic would be open again today was the polite version. whoever recorded it should ring it and listen to it.

Today I got through to book the blood test. It will be on Friday. Of course in the meantime I have looked the test up on the internet and have found that the result is not reliable in women of my age. It can often give false positives. So what I need is the scan. I keep telling myself that as the CAT scan was 2 months ago and they did not write to my GP and get things organised quicker then it must be nothing to worry about. In fact I am not worried, just want to get it sorted.

I did not go out today, yesterday took it out of me, so I have had a quiet day at home. Now that the weather is getting colder it presents a dilemma to many people with health problems.

Do you put the heating on and worry about paying for it, or do you leave the heating off and be cold? 

We are already paying £220 per a month for gas and electricity. Putting the heating on will mean that this bill gets worse. As it is we have problems paying this amount, and between needing the heating on and the fact that fuel is getting more expensive it is causing many people problems and it can only get worse. I am sure that this winter will see more people being sick because they cannot afford to heat the house, or we will see more people getting into problems with the gas and electricity companies. 

When you are sick you need the heating more than you would if you are able bodied. One cannot go out easily so many of us are stuck indoors a lot of the time. Also if you are not active you get colder, because you are not moving around to warm yourself up. 

My birthday is near to Christmas and this year I will probably end up with thermal clothing, not for wearing outdoors but for in the house. It is not something that most women of 45 imagine having for Christmas.

Added to the problems with the fuel bills food prices are rising by the week, sometimes it feels like it goes up daily. 

Because I am not able to get out everyday I have to rely on others shopping for me. They buy what is on the list whereas I would buy what is on special offer. Also for someone who is feeling bad, cooking is hard at best and some days impossible. It costs more to get veggies that are prepared. Also I am sure that hey have less vitamins in them as they have been peeled for hours, if not a day or two. But you have no choice sometimes. So another situation where it is more expensive for people with health problems to live day to day. But unless you can convince the DWP that you are telling the truth you do not get any extra money to help with the extra costs.

Even if you can get DLA does it really cover the cost of the extra expenses you have? I think not. 

Another problem with finance is that unless you know the system it is so difficult to get the help you need. I believe that everyone who is found to have health issues should be offered a visit from a benefits specialist. This person could then help you fill in all the appropriate forms. For example how many people know that you are able to get your travel expenses for hospital appointments? It is means tested but we have been spending money for trips to hospitals without knowing we could get it paid for us

Today I got a blue badge which will make life a lot easier. Now I can park nearer the shops, and will not have to get my eldest son to go out with me so that I can use his. I had been told to apply for it I had not expected to get it. So there were mixed emotions when it arrived. I was pleased as I know it will help, but then again I was a bit sad because it confirms that my walking is not that good these days.
Anyway I went out shopping today and used my badge to park. We did not do much, went to the bank then went to a couple of shops and finally to Sainsburys to get food. By the time I was going around the shop I needed the shopping trolley to hold on to and my legs were dragging and hurting.
By the time I got home it was so difficult to get out of the car as I was in so much pain.
These are the days when I have to face up to how difficult things that others take for granted have become for me. When I have a quiet day at home I can almost convince myself that I am not really that bad. But then I go out to do a small amount of shopping and it hits home how difficult things are.
On Monday I have a hospital appointment in London. Cannot imagine that I will manage to do anything other than go to the appointment and come home. We will see.
My husband turned the cushion over on the sofa today and it has helped me. The cushion was not flat and I was sitting at an angle. I hoped that by turning it, it will make the pain better.
The weather is turning colder now. We had to turn the heating on although it is a worry with fuel bills being so high.
When you are not so mobile you need to keep the heating up. Also arthritis pain is not helped by being cold. But what can you do when you are on a limited income? You either risk problems when the next bill comes or you have to suffer. When you get to the stage of wearing a t-shirt, a roll neck jumper and a cardigan and are still needing to wrap up in a blanket it is time to put on the heating.

It has been a bad day today because of how much pain I am in .

Yesterday we got the metal leg things that raise the sofa 3 inches so that it is at the right height for me. It is odd to have the chair higher but it does make it easier to get up from the chair now. 

Last night I had to take my morphine an hour earlier. Then all night I kept waking up in pain. My husband tried to help by gently rubbing where the pain was worst.

I got up this morning still in pain almost unable to walk for pain. But my meds are downstairs so I managed to get downstairs.

The pain has been there all day, despite taking all my meds.

This afternoon I wanted to go out to get my mum a birthday present. So I got a lift into town, and all I did was shop in the local Sainsbury. I did not get her a present, I could not make up my mind which slippers she would like.

By the time I got home, after being out for about an hour, I was in so much pain I just wanted to lay down and shut out everyone else.

I am ashamed to admit that I snapped at my kids. I could not cope with other people. Eventually I took my tablets over an hour early again.

At the moment 3 hours after taking the morphine, I am still in a lot of pain. At least I can sort of manage to sit at the computer now. If it were not for my computer and the TV I cannot imagine what I would do.

A friend of mine has Menieres and so she cannot read or watch TV when she is feeling bad. That must be so awful. What do you do to try and take your mind off of the pain and difficulties?

This has taken me nearly an hour to type as I keep having to take rests to cope with the pain.

But I cannot see what else I can do, if I take any more painkillers I will be zombified.

And the DWP don’t think I need DLA.