Been feeling unwell

I have not been on the blog for a while as I have felt so unwell.

I usually will not admit how bad I feel, got it in my head that people do not really want to know. This was partly because in the early days a woman I have known for years asked me how I was. I told her truthfully that I was feeling really unwell and in a lot of pain. I could not believe her response. As she walked away she said ‘Oh good good…’

Another acquaintance of ours did a similar thing in the early days of me feeling unwell. So since then I have tended to say not too bad, or a bit off, or something similar.

But three weeks ago I had to admit to my husband that I felt really unwell. I told my parents as well. I did not want to say much to them as dad has health worries and I did not want to add to their stress. But of course mothers are not so easily hoodwinked and mum knew that something was wrong. So I admitted that I was in a lot of pain.

I rang the doctors surgery and asked if I could have my INR checked in case that was the reason why I felt so bad.

The nurse checked it and it was ok so I did not know what to do.

By the end of that week I was still feeling like I had a bug and in so much pain that I got an appointment to see the doctor.

I saw my usual doctor and felt as if he had not listened. I don’t know why, but I never feel like he listens to me and believes what I say. He talked about how I had been allowed to go to a clinic at the surgery but should not have been allowed because it was for elderly people who can hardly walk. My husband told the doctor that I could hardly walk and that every step I take is so painful. But the doctor did not respond. I do not know if he does not believe that I am as bad as I say, or if he just does not understand. But every time I see this doctor I come away feeling like nothing has been dealt with. I also feel like I am being a nuisance. This time he gave me a form to get a blood test. But I had to ring the appointment line when I got home and by the time I did it was too late. AS it was Friday I had to wait until Monday before I could ring up for an appointment.

On Monday I rang for a blood test appointment and was told I could get it done on Tuesday. I was still in so much pain. This had gone on for over a week now and also, as I told the doctor I kept going to sleep. It had got to the stage where I was having a nap in the morning and another one in the afternoon.

The lady who did the blood test saw me and said that she was not doing any more tests. Clinic was shutting. I knew she was joking, she recognises me now, I really have had to go there too many times. She knows that it is hard to find a vein and get blood from me. Another woman who was waiting thought it was serious and that she had missed geting her blood tests done. So we ended up talking to her about how they knew me there.

When I finally got my turn for the blood test it was a different lady to the one who recognised me. This lady had been warned that my veins do not readily give up the blood.

I asked if she wanted to know where the best place is. She said yes and when I told her she told me that she did not like to get blood from that vein. She said that it hurts more, but I tried to tell her that if you get blood first time in a more painful site it hurts less than messing around taking two or three goes in a supposedly better place.

She went for another place and much to my surprise drew blood first time. But later I remembered why I don’t like people going there. I ended up with a painful arm and a really big bruise.

Now I had to wait a week for the results. In the meantime I was feeling worse. I would not tell anyone the truth because I was worried and did not feel strong enough to cope with other people’s worry. By that weekend I felt so bad that even simple things like climbing the stairs hurt and left me breathless with my heart pounding. Sunday I went to church with the family. I felt so bad that I just sat in my seat and did not stand when others did. My joints all hurt, and I was having strange feelings. A doctor a while ago called them feelings of disassociation. I call them strange feelings like I am not part of what is going on. A bit like being spaced out. After church we had to get some food shopping. Because I felt bad I had only been sorting out shopping on a day by day basis. I had been making shopping lists and sending someone out to get the food. Mostly it is my husband who gets whatever is on the list.

Whilst at the store I had two episodes where I almost fell over as I overbalanced to my right. I also was tingling inside. Most odd. It was like my insides were fizzing.

That night my husband saw me trying to go upstairs and he realised how awful I was feeling.

I rang the doctors on Monday to see if they had my blood results. The receptionist said my results were that and I needed to see the doctor. All I knew was that they wanted to see me because my blood results had shown something wrong with my U’s and E’s. I managed to get an appointment for today (Wednesday) as my usual doctor did not have any appointment until Thursday I was able to see a different doctor.

Today I went to see the doctor. She was most welcoming and told me that my blood results had shown that I had gout. That would explain the pain. She also said that my liver function test was a bit worrying, but that with APS I need to take statins to help lower the risk of heart attack. The liver function results were not as worrying as not taking statins.

She also gave me a form to go to a local leisure centre for medical fitness training. It is a fairly new thing, and I have rung and arranged to go and arrange what is available and appropriate for me.

It still does not explain why I feel so unwell, but what she told me today would explain why I am so tired.

The good news this week is that I start my next module for my degree course this weekend. I have managed to read one book on the reading list and also rented some audio books from the library. I have listened to two and in the middle of another one and have one more to listen to before they are due back in 10 days. The course is Children’s literature, and I am really looking forward to it.

 

Long time without a post

I have not posted on this blog for a while.

I had to get stuff for our daughter for school and in the end I made myself feel so unwell. I hurt worse than I have in a long time and more than that I was feeling like I had a virus. I could not do things without feeling really sick and unwell.

Since she went back I have taken the opportunity to rest and am now feeling quite good.

We had some colder more autumnal weather and my joints all hurt, but the weather has turned back to warm and sunny and with it my arthritis is behaving. I have a lot of aching joints and sometimes I cannot move in bed because of the pain it causes. But at least I am not feeling so unwell.

Others have told me that lupus and APS both can make you feel really unwell if you push yourself. But it is so hard to know where the line is between not doing enough and doing too much.

I have a friend who has had a big personal problem and she has rung me up a lot recently. Because she needs someone to talk to it has meant I have spent a lot of time sitting at home. This has been good for me, and I hope that I in turn have been able to help her by being someone she can tell her problems to. It has made me feel useful, and it is nice to know that we can help someone and be useful.

Today I went with out daughter to see if we could sort out her phone. I bought it for her birthday in mid May and it has stopped working. I was worried that we would be told that it was her fault as it is a touch screen phone and she has a scratch on it. But the man at the phone shop says the scratch should not have stopped it working. So it has been sent back to be repaired.

I have made myself some new gloves during my quiet time. I found the pattern on a web site and they are so easy to make. They are really not much more than rectangles and then you sew them up so that you end up with a sort of finger less mitten. I made about three pairs for me and another two pairs, one for my mum and one for my daughter. I hope that they will help my arthritis as they will keep my wrists warm. I noticed last year that when my hands were cold my wrists hurt more. So these will be good at home.

I have also started reading my books for my next course, even though at the moment I have a place reserved waiting for the paper work to be processed. The course is children’s literature and I have read Harry Potter. The kids have read them all but I just watched the films.

We also borrowed an audio book from the library. It is Northern Lights, known in America as The Golden Compass. My husband and I listened to it and the other two books in the trilogy. So that means I have read two books already. Just another 12 to go, although some of them are short books like Peter Rabbit.

I am looking forward to my next course. It gives me something to structure the day. I have goals and deadlines to meet. Gives me something worthwhile to do. There is nothing worse than just sitting around feeling rough.

When I was a child I remember a few times my parents sending me to school when I felt unwell saying that I would forget about feeling unwell. The principle is right. When my pain is bad in the night I put the TV on as if you can keep your mind off the pain it is often not as bad.

 

Missed appointment

On Friday I was sitting relaxing, it was about 10:20 and I was not washed or dressed. I was pleased that after Thursday night I could actually manage to walk. My left knee had been so painful the evening before that I could not walk. I suddenly remembered that I was supposed to be at the doctors for my INR test. I thought I would have to rush and get ready for the appointment. Something made me look in my anti coagulation book to find my appointment was at 9:20!!!

I rang the doctors surgery feeling embarrassed that I had missed my appointment. They asked if I could get there in 10 minutes. I could not do that, I was not dressed, I had not showered. But the receptionist pointed out that the nurse who does the INR tests was going away on holiday and would not be in for at least a week. The nurse had wanted me to get tested before she went away because last time I was below target. So I agreed to rush over there.

I got dressed and used loads of deodorant and talc, in the hope that I could hide my lack of personal hygiene.

The nurse saw me fairly quickly and was not cross that I had forgotten. I think the fact that I rang as soon as I remembered and was able to get there before clinic had finished got me out of trouble. My INR was 3 right in the middle of my range.

After that my husband and I went to see if my medicine was ready at the chemists. A few days earlier I had gone to collect my prescription and was told that the chemist was not able to get the hydroxychloroquine (Plaquenil). It had to be that one and the poor young lad could not pronounce it. So on Friday we went into the chemist to see if they had the tablets in now. They said that they had already had to find out for someone else and that they might have the medicine in later that day. For once I was organised with my meds so I said I would come back next week for it, as I had over a week’s supply. In fact I have about 2 or 3 weeks’ worth already.

After the chemist I went to the library. The chemist is next door to the doctors and the library is across the road. The car was parked near the library so I was not walking more than I had to.

I had my reading list with me for my next course. I am doing Children’s Literature. I am a bit concerned about having to read so many books as I read slowly. Also with the meds, the APS, lupus and the fatigue I find that I often fall asleep whilst reading. So I thought I would see if the library had any of the set books on CD. The idea being if I listen to the story before I read it I will know the story line. They said that if they reserved the audio books I would have to pay £1 per book, but if I did it myself online then it would be free. The lady then proceeded to find out which books are available. There was a man working there as well. He saw that I had given over a book list and wanted to see what was on it, and asked about the course. He then remembered that they had a copy of Treasure Island as a graphic book. Marvel have made books that are like comic books of some classics. Unfortunately Treasure Island was not available. But there was a copy of Northern Lights on CD so I paid 80p to borrow it for three weeks.

By the time I got home I was hurting and worn out.

Yesterday we took our daughter to get her school shoes. I had suggested that I would have a drink in a coffee shop whilst she walked around the shops to find out if any of them had brown shoes in stock. We walked through M&S to get into the High Street and so she and I looked at the shoes in there. My husband was with us and he found some shoes, but as I pointed out one pair were the wrong shade of brown and the other pair had heels that were too high. I am not going to buy shoes only to be told on the first day that they do not conform to uniform rules.

After we had found no shoes we got the rest of the stationary she needs and went to a shop that she said sold the PE kit. The woman in the shop was so upset. We were not the first and whilst they are in talks with the school nothing has been agreed, so they are not stocking the PE kit yet. Our daughter got upset on the way back to the car as the shop that sells the PE kit is the one we went to last week for her skirt and blouses. I do not have a credit card and so we had a problem with getting the kit.

When we got home I rang my parents and mum agreed to order the kit. I SKYPED mum the shop details and also what we needed and which sizes. Then I sat waiting with SKYPE open in case she needed to ask any questions. A few minutes later she sent me a message to say it was all sorted out and they would post the uniform on Tuesday. Also that I owed her £16.18. Looks as if they don’t charge too much for postage. Just wish that I had sorted it out last week when we were in the shop.

Today the family all went to church but I stayed home again. I had a bad night, kept waking up because it hurt when I moved.

We have had a quiet day and I have done very little at all.

Now we have 3 days to find brown low heeled shoes for school. Tomorrow is a bank holiday so I don’t know if it is a good idea to go to a local large shopping centre (mall) or if it will be full of people. I have been told that this shopping centre has mobility scooters that you can borrow. I think if we do go I will need to try this out. The shopping centre is too big for me to walk around. Last time I was there, at the beginning of the holidays I made myself feel really bad. Just ended up exhausted and hurting.

Our daughter is starting to get really worried about school shoes. I can understand why, she does not know but I am worried now. Her friends all have their shoes so she has posted on Face Book asking where they got their shoes. Not one has answered so far, so maybe she needs to phone them. Amazing that we have spent so many days so far trying to get brown low heeled shoes.

 

Should we push ourselves and take the consequences, or take it easy?

Yesterday we had a day out in London. First I had to go and get my INR checked at the doctors’ surgery. It is below target again. I did wonder because although I have had a lot of problems with my gums bleeding, I have been having problems with remembering words and what things are called. Also I have been starting sentences and then not know what I need to say next. As for my typing it is anagrams again.

I also took our daughter to see the doctor as she has permanent headaches. A good week means she has one a bad week would be 7 days of headaches. The doctor we saw was a locum, and he was really helpful. He has given us a blood form and on we notice he has asked for an Antiphospholipid antibodies test. So he has taken seriously the fact that I have APS (Hughes syndrome) when I told him that this was something that concerned me he said he did not know about the genetics of APS. He accepted my answer that whilst there is no direct hereditary link with APS it is noticed that in families that where one person (usually the woman) has an autoimmune condition then there are usually others in the family with autoimmune problems. It may not be the same condition but another autoimmune. For example a mother has APS and her daughter has rheumatoid arthritis. It tends to be women who have these problems. All the autoimmune conditions I know about have 9 women for every one man with the condition. There must be a reason why so many more women get autoimmune conditions.

After the appointments we went to London for a planned day out. I knew this would be challenging, but wanted our daughter to at least have one day out with me this holiday. I talked to my husband about whether it would be better if I had a wheelchair, after all I walk so slowly and it hurts so much now. His worry is the use it or lose it concept. He is worried that if I use a chair I might lessen what I can do. It is something that has worried me, but I had not said anything to him.

We used buses and I had planned the day with buses in mind. The idea was that there would be less walking for me. Also our daughter does not like the underground. (Another symptom of APS is claustrophobia).

We had a lovely day out, although at one stage we sent my husband (her dad) off to get some paracetamols. She had a headache, I was in more pain than I would admit to and my husband had backache. I am sure walking so slowly with me does not help. We were sitting on a bench in the middle of a church yard where there was a market. I noticed a Sikh man watching as the three of us all took two paracetamols with water. The only drink we had was a bottle of water that I had not finished so we took turns to have some.

One highlight was that on the first bus we used a lady got up and gave me her seat. It was good to know that people do notice the stick and that there are people who care enough to want to help. That lady cannot know how much her kindness helped me.

By the time we got to the train to come home I could hardly sit let alone walk. I was in such pain on the train. I was glad that I sat next to our daughter as she is slim and it meant I was not squashed. When we got to our station I did not know how I would get off the train. It was a big step and I was in so much pain. I had taken my evening tablets on the train with no water, but still the painkillers were not enough to stop the excruciating pain I felt as I stepped down from the train.

I got in the car mainly because my husband pushed me in. Our son was concerned because he could see how bad I was, and he has had enough days where he could not walk for pain that he really understood how it was for me. I said sorry to everyone and took off my shoes. I thought if I could get my feet cooler it might make the pain easier.

I had promised the kids takeaway pizza last night so they went out to get tea.

By 9:30 I was in my pyjamas and ready for bed, but then when I got there I could not sleep for the pain. I finally got to sleep about 1am.

This morning I woke up hoping that the pain would not be too bad. But it was bad. I could hardly move and it took me about 20 minutes to get out of bed. Getting down the stairs was something else. Had it not been for me needing the toilet, and the only one that is easy for me to use it downstairs, I would have put on the TV by my bed and stayed there.

I have had to take extra paracetamols again today to cope with the pain. It is in so many joints. I expected my back, hips and knees to hurt, but even my toes hurt.

I am sure in a few days I will be back to my normal pain levels. In the mean time I keep telling myself that at least I gave my daughter a day out to remember.

 

A doctor who knew about lupus and APS!!!

Today I had to go for a check up at the hospital. I was diagnosed with ovarian cysts last year and since then they have been scanning me regularly and also blood tests.

I had the scan done last week. They scan your tummy first, a bit like when you are pregnant then they scan internally. This time there was a man in the room. I was told that he was there because they had a new machine and the woman did not know how to use it. As she put it it was like driving a new car, things are in different places. After the stomach scan you have to empty your bladder before the internal scan. When I went back they asked if I minded the man being in the room. This left me with a difficult decision. I thought the man was a sales man or something like that, and did not want him in there, but at the same time what if the woman could not do the scan properly, or missed something because of it being a new machine. So I made sure he would be standing in the corner by the machine and not able to see what was being done. This assured I said ok he could be there. It was later, whilst the scan was being done that I found out he was a radiographer who had done this scan loads of times.

I really wish someone had thought to tell me who he was and not just that he was there to help the woman learn where things were and new functions on the machine.

I was told that the scan results would be available for when I went to clinic today.

Of course life never runs that smoothly and so the results were not in my notes. The doctor had to access them from the computer. He was really friendly and even had a laugh with the nurse about how he has special powers to access certain programmes. Whilst he was trying to access the programme he got a phone call from the IT department who somehow knew what he was trying to do and then talked him through getting my scan results.

The news was that one cyst seems to have gone and the other one has grown bigger. The doctor told me that the mirena coil that I have is probably the cause of the cyst as it is a known side effect. It seems to me that you take meds to control one problem and then end up with a new problem because no drug is without side effects.

The CA125 blood test is to check for ovarian cancer indicators and that apparently is low. Because of that they will continue to monitor me. So I get another of the embarrassing scans in three months and more blood tests.

The doctor was impressing though. He knew about lupus and APS (Hughes Syndrome). He was concerned that I was in pain. He was of the opinion that no one should be in constant pain.

After the appointment I had time to spare. Our eldest son had gone off with the car. Our daughter has gone to stay with my parents for a few days and as the hospital was about half way between our house and my parents our eldest son had said he would take his sister whilst I was at the hospital.

The appointment was quicker than I expected and so I finished a long time before he would be back. I rang him and arranged to meet him at a different place and then got a bus into the town. I was surprised that it cost me £1.50 for a bus journey that took less than 4 minutes. But I was pleased that I managed.

I am home now and exhausted. I hope I will sleep tonight although the pain might stop me sleeping. I am in a lot of pain tonight. I suppose that it is payback for a couple of days of trying to be a bit more independent.

Tomorrow I am going to a shop to see what is available to help me go out. I do not want to have to rely on a scooter, but at the same time I am fed up with having to use a car to go out. The town is about a mile and it would be nice to be able to go out and get fresh air instead of having to drive. Also I know that there are times when I do not do something, not because I don’t want to, but because I am hurting too much.

 

How should you answer the question?

It is a question that is asked of people every day,

How Are You?

But how do you answer this question when the truth is most days, in so much pain I don’t know what to do, or I feel awful? Most people really don’t want to hear that, they want to hear that you are OK. Or indeed they did not even really expect an answer. I will never forget one day actually telling one lady the truth. She was always saying ‘How are you?’ So I told her that I was really badly in pain that day. As she moved on to the next person that she was going to talk to she said to me ‘Good good.’ in other words she did not even wait to listen to the answer.

I wish people would not ask this question if they do not really want to know. Or if they are not able to cope with the answer. My usual answer is not too bad because people really do not want to be listening to a list of someone else’s problems. Some people do look at me and say and what is the truth. One man we used to know (he died last year) was the sort of person that others walked by. He looked a bit unkempt, but he would always make me tell him the truth. He had problems of his own health wise, and yet he always had time to listen to other people’s problems. It got to the stage where whichever of us asked the other one first how they are, they would follow up with ‘and the truth is’???

So if someone asks me today what should I say? Should I tell the truth that I did not sleep properly last night? Should I tell that I have so much pain down my left side that I do not know what to do with myself. The morphine has not stopped it hurting, which raises the question am I getting immune to morphine, or is it just that I am having a bad pain day?

Last night I had a bath because of the pain in my back. The idea was to try and soak and relax the muscles and joints. What actually happened is that when I was trying to dry myself I felt a sharp pain in my left wrist and the wrist and hand has been painful since.

I do not think that I will be going out anywhere today, I am having enough trouble walking in the house let alone going out. It is a lovely day, but I cannot walk well enough to go out plus I am scared that I will make the pain even worse.

This is not a pity party today. I am trying to put into words what it is like to be in constant pain.

The problem is that unless you look bad people do not think there is anything wrong. If I had been in an accident and broken bones then people would be able to see that I was hurt. But there is nothing for others to see so how can they understand that whilst I look as fit and healthy as they are I am in constant pain?

Also I am not truthful about how much it hurts. Why bother others, would they be able to do anything? No they would not. Also it would upset them to know what it is really like, so I keep on doing things and not admitting how difficult it is these days.

Today though the pain is too severe to hide. Nothing is helping. I have tried laying down, sitting up, even walking to see if it helps. But everything I do is agony. So today I will stay home and read and watch TV whilst doing stuff on my computer. I will not go out so I will not see anyone and that means I will not have to answer the question.

HOW ARE YOU TODAY?

 

Managed to go to the wedding

A lot has happened over the weekend, mostly as the result of going to a wedding.

My husband, eldest son and I  went to the wedding of  friends of ours. We have known the groom for over 10 years. He has had a hard time the last 3 years. He crashed his car, turning it a number of times and was lucky to walk away with nothing worse then soft tissue damage. Although if you are a personal trainer soft tissue damage is not good because he had to have so much time off work. He was also diagnosed with an enzyme problem that means he has to have medication via a drip every fortnight.

The wedding was lovely and I hope they will have many happy years together.

I was also happy because I got an outfit that I actually liked. I had a number of compliments about it from friends.

Saturday evening we went to their evening reception.

When the invitation arrived I had intended refusing, just as I had for a wedding earlier this year. However the first wedding was about an hour to hour and a half drive away so my husband went with our eldest son. I was able to use the fact that the groom at that wedding was their friend. But this time it was someone that I knew before they did as for about a year I worked in the same building as I did.

But before I could think about how to refuse the invitation without offending anyone my husband said yes we would love to. I could not think of how to get out of it then. Anyway I wanted to go even though I was worried as to how I would cope.

I drove to the reception venue in the evening and had to use my stick to walk from the car to the hall. There was, I later found out, disabled parking right by the door, but by the time I realised this I would have had to walk all the way to the car to drive it to the parking space and that seemed pointless. I almost did not use my stick as many of the people I knew there have never seen me use a stick. I do not use it at home only when I am out, and so they do not know I use a stick. I could see a couple of people looking at the stick and felt really bad about it. I really must stop feeling that using a stick is a sign of my wrong doing. I need a stick, I should use a stick and people should feel sympathy, not look at me as if I am doing something odd.

WE had a lovely evening, sitting among friends chatting happily and were home by 11pm.

I was in a lot of pain when we got home and an hour later I could not settle in bed because the  pain was so bad. My husband tried to rub my back to help me but I ended up crying with the pain. It was like he was poking around in an open wound it was so painful.

Eventually I got to sleep at 3:30 and after a bad night, waking up in pain a number of times I got up at 7:30. It was when my husband got up that I found my voice had gone. The result of shouting over the music the night before had left me without a voice.

Also I was in so much pain. I did not know what to do, so I got dressed and went to church. I just thought that if I was going to be in pain I might as well be out among friends than sitting at home on my own. My parents used to say when I was little that if I did …… then I would forget about feeling bad. So I hoped that might be the case.

During the morning my husband leant over and asked if I was OK. I said I hurt but was otherwise OK and he asked if I was going to pass out. I answered no.

He then mouthed to a friend who had been watching me,  that I was hurting. It was only later that he told me I had gone grey and a bit blue. Glad he did not tell me at the time I might have worried.

I had another bad night last night and have spent the day in pain. We did manage to go out shopping but it was such an effort. Every step was hurting, plus I feel like I have done a marathon. I feel tired and achy, exhausted is not an over exaggeration of how I feel.

It is so hard to know what to do. I was invited to a wedding next month but it is about six hours drive away. I get really badly travel sick so that is the reason I gave. But it seems a really weak excuse to say I could not go because I know that I cannot cope with the pain I will get.

People look at others and when they look at me I know they cannot see that I am suffering. It is so hard to make people understand just how hard life can be at times. How do you describe the pain without sounding like a drama queen? Also there are people who think that if you are in pain 24/7 then you get used to it and that you do not feel it as much.

 

The ups and downs of life

It has been a busy week, not what I expected when I looked at my diary.

Monday I went with my husband to an ENT clinic. He has always had a problem with snoring, but recently it got so bad I made him go to the doctors partly for him and partly because I am not getting enough sleep. The noise is amazing, I am sure that if I got a thing to measure the decibel levels he would break noise regulations.

The end result is that he appears to have both apnoea and insomnia. He is going to get a sleep study done and then if that gives the results that they think it will he will get a mask thing to keep his airway open.

After  that we went shopping as I needed an outfit for a wedding on Saturday. I found a lovely jacket. It is very bright but with white linen trousers and a camisole it will look lovely. I also will be able to wear it with jeans. So it will get a lot of use. AND it was a bargain!!! It was reduced from £35 to £17.50. I am so pleased with it.

By the time I got home I was worn out. It is just so frustrating how little I can do before I am tired and in pain.

Tuesday I went to the doctors for my INR test. It was 3.4 which is in my target range of 2.5 – 3.5 so no change was needed to how much warfarin I take. I will have to go back next week to see if it is staying level. We talked about me having to buy a machine but if I can get it tested at any time the surgery is open maybe we do not need to buy one for home. After all it is nearly £400 and although my parents have said they would pay for it, it is still a lot of money to spend. It is not available on the NHS. There are studies being done to see if the home testing is worth doing. I am involved in the study as one of those without a machine of my own. The questionnaire I have needs to be done over three months. Then they will have some machines to lend out to see how people cope with home testing. I am on the list to borrow a machine as part of this. So now that I have a local place to get tested I can wait and see what the study shows.

I also had a phone interview from the carers team. I am a carer for our 25 year old son. He manages a lot for himself but cannot do basic things like cooking and cleaning. So officially I am his carer. Although in practice as a family we all help each other. There are resources to give carers a break and I was surprised when I was told that I could get a free gym membership. There is a local gym that has a swimming pool so if I could afford to join it would help my mobility and joints to be able to swim. Trouble is that it is expensive to join and I cannot justify the cost. So I have to wait and see if they can do something to help me.

Yesterday I got my hair cut. I go as a model, as do others in the family. It means I can afford to go every two months, but it also means that the students have someone they can learn on. It takes up to two hours, but then again it is only £7 so you don’t mind. The young man who was doing my hair yesterday finished and I was thinking that whilst it looked neat I did not like it. But fortunately the owner/trainer told him that whilst it was technically probably the best hair cut he had ever done it did not suit me. Ian then proceeded to show him what he should have done for my face shape. So the hairdresser student then finished it off. The second time it looked lovely. He was smiling and Ian told him that this was how you should feel after you have done a haircut.

Last night I was so tired that I feel asleep in front of the TV. I asked my daughter for a cup of tea, but she waited until I was awake before making it. Sensible girl realised that it would just end up going cold.

Today I have nothing planned. But then again the store cupboard is getting low and also I need a top to go under my jacket for the wedding. So I might go into the town. It is only a mile there, so I end up going more than I would if it was a long way.

Also I know which shops I need and can park so that I do the least amount of walking.

 

Human Barometer

I have a good friend who refers to herself as a human barometer. I never understood when people talked about how arthritis is affected by the weather, that is until my arthritis got bad. Now I can understand how when the weather changes so does my joints. The last few days I have had so much pain. At first I thought it was a reaction to having to do more with the family being so unwell. Whilst that was probably a contributing factor the weather seems to also be part of the problem. When we had the hot dry weather my joints where the best they have been this year. I was going to try and reduce my pain meds, but then the weather changed and now my painkillers are not sufficient. Not that I can do anything because any more pain killers and I would probably be a zombie.

I have had suggestions about natural painkillers. Nettle tea and tumeric are supposed to be good, but I will have to check that they are safe to take with my other meds. Pain may be difficult to live with but if I use something to help that raises my risk of a blood clot then that would not be sensible. When you have more than one health condition you learn to prioritise. So in my case I would love to be pain free but making sure I lower my risk of blood clot is more important. I have tried to eat more healthily recently, so more fruit and veg and less junk and processed foods. I am also going to visit a naturopath. I think that is the right title for him, he is someone who understands how foods interact and how to use natural things instead of chemicals to help with health problems. Obviously anything that is recommended will be checked out with a doctor as well. I do not want to cause any problems. But I do want to do as much as I can for myself naturally. If there are ways of controlling pain that means I take something natural rather than morphine that would be good.

I do believe that we can get most of the medication that we need from natural resources. After all aspirin first came from the bark of a tree. Some heart medication is based on fox gloves.  We all know that vitamin C is found in fruit and veg, especially citrus fruits. So I would like to see what I can eat that will help me feel better.

In the meantime the description of human barometer is a good description of what it is like to have arthritis. I do not know if it affects the lupus joint pain. But then who knows what it is that is causing the most pain, arthritis or lupus? As long as the pain is minimised it does not matter why I have it, I just want a break from it.

This week we have no appointments. I do need to chase up what is happening about anti coag clinic. The one I was attending have discharged me because I refused to let them do venous samples any more. I said they could do finger prick tests. But the doctor there (who has not seen me since 1999 when my blood tests showed I had APS but nothing was done about it) says it must be venous blood. So they now will not allow me to attend. The knock on affect is that my INR is not being tested. It seems so odd to me that they insist I need regular tests, but now I am not being checked up on at all.  The local hospital did think that I could get the finger prick test there, but then changed their minds. I assume with a little help from someone else.  So I will have to chase up what is happening. I will try ringing the GP surgery but in the past rather than sorting things out for me they tell me to ring the clinic and sort it out. I wonder how people who do not have the support I do, or the determination to get things sorted out manage. I assume that there are people who are not getting the care they should because they do not have the ability to stand their ground and push for it.

In the meantime I try and look after myself and not do things that I know hurt. But yesterday I caused myself a big problem. There was a pile of washing up in the kitchen and it was just sitting there. In the end I went and did it myself. It caused me a lot of pain and also I got told off for doing it and not leaving it. Last night I lay in bed watching TV because I could not sleep for the pain in my leg. The TV in the bedroom is wonderful, I can put it on and it helps take my mind off the pain. In the past I used to get up and go downstairs to watch TV. The pain is a problem at night, you lay in a dark quiet room and then the pain seems to attack. I assume it is because there is nothing else to do so you notice the pain. My dad used to tell me if I did something I would forget about being unwell when I was a child. I think that he had a point.

 

Pharmacist thinks it is swine flu.

I went to the pharmacy and was able to get enough paracetamol to keep the family going for a few days. Because they could see my record on their computer they were able to let us have more than the normal amount of paracetamol. It was that or taking the whole family there with the lurgy.

We then went into our local town and managed to get loads of lemon decongestant drinks. It looks as if we have gone mad and got far too many. But as I pointed out to my parents if you think that each person takes 8 paracetamols a day and there are 5 people needing that at the moment then the numbers add up.

Our pharmacist asked about symptoms and then told us that it sounded like we may have swine flu. If that is the case then 5 have it here. I am not feeling so unwell, but then again I take morphine for my arthritis and lupus joint pain. So of course that would mask symptoms.

Our daughter has slept all day on and off. She is sitting in an armchair now sound asleep. Will probably leave her there and sleep on the sofa so she has help if she needs it in the night.

My joints are so painful tonight. Because others in the family are feeling so unwell, I ended up doing more driving than I am used to. I did 4 trips into town, so I drove about 8-10 miles. It has left me hurting. Still if I am going to sleep downstairs I will watch TV. It is the best thing to help me sleep. I sit down to watch something and wake up at the end, or miss the programme all together.

Hopefully the bug in our home will turn out to be a cold or something other than swine flu. But as our daughter had two girls in her class with it then the chances of her getting it are fairly reasonable.