A good day

This weather is good for me, it might be hot but it makes my joints feel better. Like I said yesterday it is more of an ache than the stabbing burning. I even went out today.

We went into our local town. Partly to get some food shopping and partly as some of the local churches had an event. There is a ruin of an old church in the middle of  our local High Street and although it is surrounded by shops it is still owned by the church. My husband has been out the last 3 mornings as he is helping with the shopping to get the burgers, bread and water. Then there is a team of people who are barbecuing the burgers and giving them away free. Another group are playing music and singing.

I went along with my eldest two boys and husband and we sat and had a burger. After that we went to the bank as I needed to move money between accounts. Whilst I was there I met a friend of ours who is going to India in two days time. He is married to a lady from India and they are going there to live.

Whilst we were talking, there was a disturbance by my son. He had fallen out of his wheelchair and an elderly man was trying to help him. Only thing the man was a lot smaller than our son, years of using crutches and wheelchairs has caused him to have large upper body muscles. When we looked to see what had happened we found out that a wheel had come off of the wheelchair and the chair had unbalanced. The man had seen the problem and was trying to stop our son falling out and getting hurt.

It just goes to show that there are some gentlemen in this world.

After that we went to see if we could find a bed for our youngest son. As he is as tall as his bed is long he had asked if we could get him another bed. We decided that a double bed would be the best idea when we found out it would cost us £600 at least to get an extra long single bed and then we would have to buy special linen. We managed to get him a double bed and it will be delivered tomorrow morning.

On the way home I commented to my husband how much better I was feeling with this hot weather. The reasons are partly because the heat is good for my joints. They are still hurting, but it is not the stabbing burning pain and more an ache. More like muscular pain.

Another reason for feeling a bit brighter is that everyone slows down in the heat. No one thinks you are odd if you are tired in the heat or if you move slower. So it is not so obvious that I am walking slowly. Or that I am doing jobs slower.

I think the fact that the flowers are out and there are so many birds around is also part of the reason for feeling brighter. After all it is not so easy to feel bad when there are beautiful flowers all around.

I have to be careful of the sun, as it can cause problems for those of us with lupus. I am fortunate that for me it causes something like prickly heat in that I get very red and itchy. But then I have never been one for laying out in the sun.

After we got home I got a phone call from Motability asking if I had decided what I wanted to do. I said that I had chosen which car I would like, but had not finished filling in the paperwork. Now that I am on DLA I can have a car to help me get around. The one I like is automatic, even the hand brake! I find it difficult to pull the hand brake on and even harder to take it off, especially if my eldest son has put it on. This new car has no hand brake, well not a traditional one, but has an automatic one.

The man suggested that when we have finished filling in the forms I ring up the help line as he pointed out if it is filled in correctly it will save time.

It takes 4 weeks for them to OK my choice, then I can order the car which takes about 12 weeks to be delivered. So it will be close to Christmas by the time I get it.

 

Hot weather

I have never enjoyed the hot weather, in the past the cold winter months were good. I have not  owned a winter coat for years because I have no need. One of my children is similar.

But the last two or three years that has changed. Last year I enjoyed the hot days which was a shock for me as this was new. But the heat means less pain in the joints. As a fair skinned person I have always taken care not to be out in the sun for long so I have not had much of a problem with lupus and sunlight. But the last few days I have felt better than normal. The heat does sap energy, but then again I have less of that on a normal day. Everyone is less active in the hot weather, so I do not look so different.

We had a new shower put in yesterday, at long last we have one that works as a shower should, so I can keep cool by taking a shower. We have a board to put across the bath so I do not have to stand the whole time.

Granted I am hot sticky, I think we ladies call it glowing. But the relief from pain is worth the perspiration. I am not pain free, but so far it is more of an ache and less of a stabbing pain.

The weekend weather is forecast to be a bit cooler than the last few days. But 24C sounds good.

The only thing I have to sort out is why the fan I used today was blowing hot and not cool air.

Today I also managed to download a game that I have been trying to buy for a few days. It would not download but apparently that was due to me using Internet Explorer and when I used Firefox, as suggested by the company I was buying the game from, it worked straight away.

So my day has been spent, watching TV, reading a book and playing a computer game. Oh and a small bit of housework. Tomorrow I am planning to try a trip out to our town, a bit of shopping and a drink in one of the many coffee shops. Also need to find a new bed for our youngest son, at 6ft 3ins he is the same length as his bed. We did ask a local shop how much for a longer bed, the answer was about £600. I think we need to look at a double bed for him. That way he can lay diagonally and then he will have enough length to sleep.

 

Did forgetting to take my tablets cause a bad day?

I was not well yesterday. I got up at 6 with stomach pain and so I got up and went to the loo. I went back to bed hoping that that would be the end of problems, but it was only the start.

I got up again at 7 as normal to get people up for school/work. But I was not feeling too good and fell asleep on the sofa. I woke up and realised that our daughter was not getting ready for school. She did not feel very well, but my husband and I decided that it was mostly self inflicted from the sleepover so we made her go.

I felt really bad about making her go when I found myself spending the day alternately between the loo and asleep on the sofa. My legs were so painful I could not get comfortable, they really were bad and I could not understand why.

When she got home she told us that she was really surprised that for most of the day we were right and she was able to forget about how sick she felt. But when they did PE, running a mile outside in the heat of the middle of the day, she felt really bad.

It was about 6 when I went to take my evening meds that I realised why I felt so bad. I had not taken the morning tabs. I decided that I would miss them altogether as it was so late. I could not take the pain killers anyway as I was talking another dose.

I did wonder at that point if not taking my MST had caused some of the problems, as I had sort of gone cold turkey and missed my ‘fix’.

I did not eat anything yesterday, other than a slice of plain bread, and went off to bed about 10:30. I did not sleep until about 1 but managed to sleep all night and got up again at 7 this morning.

I feel a lot better than I did yesterday. A bit delicate but so much better than yesterday.

So was it a bug or was I my feeling unwell yesterday caused by not taking my medicine?

 

Busy weekend

It has been a busy weekend.

We promised our daughter a sleepover for her birthday in mid May. I had assumed that it would happen in half term holidays but of course that was not possible and this weekend was the first time they were all able to be here. So with trepidation I agreed to 5 girls staying here. They are all 14 years old so I expected noise but they are self sufficient at that age.

As it was we ended up with 2 coming, two could not come due to family things, and one was grounded.

I spent more time that I usually do shopping so that the girls would have the food that they wanted. Friday evening I met my daughter after school so that she could buy the stuff for their party bags.

Saturday I did a deal with her, I shopped and she did the housework so that the sitting room was clean enough.

By the time the girls arrived I was shattered. I expected a night with very little sleep. As it was the girls cooked their own tea. Pizza bases that they put on their own toppings. We went to our bedroom at about 8:30 and the girls had the run of downstairs. I was asleep earlier than usual as I laid on the bed watching TV. By the time I woke up this morning the girls were up and had had breakfast.

But of course I now have really painful knees from all the shopping I had to do.

I will be able to take it easy tomorrow as there is nothing in my diary all week. Apart from the plumber on Wednesday. I know that if I were fit and healthy I would not have had any problem with the sleepover. The shopping should not have been a big deal. I would have been able to clean up for the girls coming, and cooked their food. But then again the girls enjoyed the freedom, and our daughter did not mind doing some cleaning for her friends being here. In fact after they had eaten she went and did the washing up without anyone asking her. Her friends did not realise until she had almost finished and told her that she should have said as they would have helped. They are lovely girls.

 

Ouch

This weekend has been the worst for pain ever. It got so bad on Saturday evening that I considered going to the hospital to see if they could do anything. I have not slept a full night for about a week now, because of the pain.

I have spent the weekend watching TV and browsing on-line. I could not hold a book for more than a few minutes because of the amount of pain I am in.

Last night I was up between 3 and 4:30 and then I had to get up again at 7, so I am really tired now. 

My computer has to go for repair today. Don’t know when it will be back, hopefully it will just be a couple of days. In the meantime I will put a book on my book stand and catch up on some reading I have been meaning to do.

Also I have had to organise the house being tidied because at 10 today someone is coming to survey the house. This has caused a bit of stress. I get so frustrated that I cannot do enough housework, and this weekend being in so much pain has meant that I have sat on the sofa and given out orders. The kids must wonder sometimes why I tell them what to do but I don’t do anything myself.

Today I am keeping a watch on my left leg because the calf is really hurting. I cannot feel any lumps. But sadly when you have something like APS or Lupus you wonder if a pain in the leg is just a sore leg, or is it something that you should worry about. For me that is the most difficult bit of lupus and APS. The local doctors seem to understand my condition less than I do. So when I tell them about things it is not always taken seriously. It is so hard to know when to contact the doctor and when to ignore the problem. I was brought up to ignore things in the hope that they would go away. So my immediate instinct is to not contact anyone. But at the same time APS and lupus can cause serious problems. 

I will have to see how the leg goes and decide if I need to contact anyone or not.

 

Did what the physio said now I am unable to move

I did what the physio told me on Wednesday and I managed to walk to the poling station yesterday. It is so near that there is no way anyone would consider not walking there. It hurt when I was doing it, but the physio had told me that I must accept that exercise does hurt!!

Last night I could not sleep for the pain I was in. My back, both knees and my right hip were the worst, but it felt as if every joint in my body was on fire. The pain was so bad it kept me awake. When I did manage to doze off the moment I moved I woke myself up. So in the end I had about 3 hours sleep. After our youngest had gone to school my husband suggested that I went to bed and tried to get some more sleep. I managed another 3 hours, and felt a bit better. I forced myself to shower, even though it was so painful.. 

Now I am watching TV and keeping up with the election news on Twitter. But I am not able to read as my arms hurt too much to hold a book. I am thinking about asking for an Ebook reader for Christmas and my birthday, which is just before Christmas. That way I think I would not have the same problem with holding books. 

For now I have taken my morphine and am having to try and relax and cope with the pain. 

I will make sure that I tell the physio just how much of a problem it has been following her advice. Maybe I should just stick with what the pain clinic nurse said and listen to my body.

 

Life, like a yoyo, is up and down.

Been busy the last few days. Well busy for me that is. 

Tuesday I got my hair cut really short. It has not been done for 6 months and the young girl was not convinced that I really wanted it that short. When she had finished she actually seemed surprised that I look better with my hair short than I do long. Should I worry that she did not realise that before she cut it?

Tuesday afternoon I had to get my eyes tested. This has to be done yearly because of the meds I take for lupus. Everything is OK and my long sight is really good, sadly the short vision is not as good and I really should use my reading glasses. Hate wearing them, because when you look up everything is fuzzy.

Wednesday I had physio. I was asked a few questions and then we got to the one of where does it hurt. I told her and she said that she needed to get something. It seems that a local hospital has a programme for people who have fibromyalgia. It runs over 8 weeks once a week. Three of the sessions are hydrotherapy which sounds good. It is in another town so it will involve a 30 minute drive there each week. She did not know when the course starts, or indeed if I can get on the course. What she said that did upset me was to keep on about how I need to keep doing exercise. I tried to tell her that I push myself every day but she kept on as if she thought I sit in a chair all day. Maybe the physio could do with one day in my life to realise how difficult it is to go out for a walk everyday. 

Whilst I was in there I had a funny dizzy turn. It has happened a few times, strangely never at home. I wonder if it is caused by the lights. I have read of people with APS being affected by fluorescent lights. I hope it is that because if it is not then it was something worrying. I could not talk properly, I felt dizzy and sick and as if I was about to faint. I told the physio and she just sat there until it had passed. If it was a TIA then she should have taken more notice of it. I got the feeling that she felt I was just being a drama queen. It left me feeling so bad and all I wanted to do was to go to bed. But of course there was shopping to do and the older two boys needed picking up from the town. Our eldest has let his blue badge run out and has not sorted out a new one yet. So he has to either pay and park in the car park or get me to go with him so he can use mine, or get me to drop him off and then pick him up later.

Today has been a quiet day. I went to vote. The poling station is behind my house and a couple of years ago I could walk there in about two minutes. It took me ages and I was so sore by the time we got home again.

I am so tired today, exhausted would be a good word for how I feel. It is so frustrating to not be able to do things that I used to take for granted. I wish that I could show people how it is when things we take for granted are taken away from us. For example a full nights sleep would be lovely. Last night I woke my husband and myself up because of the pain I was in. To be able to go out when you want and to walk in the woods is another thing we take for granted. But when you are not able to do it anymore you realise how much you took the future for granted. 

Still there are good times as well. It is not all bad, I do enjoy the simple things in life, like watching five or six magpies in a tree in our front garden. 

Tomorrow I have nothing planned. Bet that I find something to do though. Tonight I just need a good sleep. I am so tired today.

 

A busy week off

The schools here have had half term holiday. 

Sunday my husband and two of our children went to Dorset with some friends. I say children but they are 14 & 24 and the two who stayed home with me are 18 & 22 so not little children. They went away on Sunday and were home on Wednesday. From what they have told me they had a lovely time. 

Those of us left home also had a good time. We did a bit of housework. I took it very slowly taking most of one day to vacuum the kitchen, hallway and sitting room. That probably does not sound like much but for me it was masses. By the evening I was shattered.

The boys helped with cooking and we had a quiet few days, with time together that we don’t often get.

Wednesday our support group met. I am always worried that no one will come. I changed the venue, for a number of reasons, and we all went to Sainsbury coffee shop. There were three of us this time. We spent nearly two hours chatting and exchanging ideas. The holiday makers got home and met me there as well. 

By Wednesday evening I was in a lot of pain. But there was no rest because I had booked up some things.

Thursday I took my daughter to the opticians, she is getting some new glasses next week. I also checked and it is time for my annual eye test. The medication that is given for lupus can cause problems with eyes so we have to get tested every year. 

Tuesday I got a phone call from our GP surgery to say that he had received the letter from my consultant and I needed to go and talk to the doctor. The first appointment I could get is Monday. I have also booked an appointment for my husband as I got almost no sleep on Thursday night. He was not just snoring but you could hear the pauses when he stopped breathing. I finally got to sleep at 4:30!

Friday despite the lack of sleep I had promised to take our daughter and a friend to a local town so that they could do some shopping. We are a bit over protective so whilst they were shopping we went looking at cars. My eldest son came as well. After all he got a new car in March on the motability scheme. So he came to see what I was choosing, and also to make sure I did not choose the same car he has. 

I saw a lovely car in the Citroen garage. It is a C4 Picasso.  Because of my back I need a car seat that is neither too low or too high. This car was just about right, but even better it had no hand brake. The hand brake is electronic and taking off handbrakes is something that I find hard. I sometimes have to ask the passenger to take it off for me if my eldest son was the one who put it on. The car is also automatic which would be easier on my joints. I was surprised to find out that the 7 seater version would cost me less money. The reason is that ‘they hold their price’ better than the 5 seat version. I will have to speak to motability to see if it is possible for me to get that car. If not I will keep looking. 

Yesterday my daughter and I went out together. It is not often that we go out just the two of us. But my parents (well mum really) had decided that this year for her birthday they would give her a make over. She was given a manicure and shown how to do it properly. Also how to pluck your eyebrows properly and how to cleanse and tone your face. Our daughter loved it and I am sure that she will go and pass on what she learnt to her friends.

Today I am home having a rest. I am so tired from doing so much and also I hurt. My mother noticed yesterday that I was in pain. I tried to hide it but a couple of times she caught me jumping when I moved and my back caused pain. At the moment my back is sore, and I also have a couple of tingling fingers on my left hand. I often get that in my little and ring fingers but this is my middle and ring fingers. Don’t know what has caused that. I am sure if I ignore it long enough it will go away.

I was thinking that as the schools go back tomorrow then I would get a rest and be able to relax during the day time. But tomorrow I have to go to the doctors at 10:40 and my husband has to go at 4:50. Then Tuesday he is at physio at 8:30, I am getting my hair cut at 10. I am at the optician at 2 and he is there at 3:50. I am supposed to be at anti coagulation clinic on Tuesday but I am not going to go. The last time I was there they made me feel awful, like a piece of meat and not as a person. I also felt as if I had been assaulted. So unless things change my GP will have to change me to another hospital because I cannot bear the thought of going there.

Finally Wednesday I have physio at 1:30 then I have  the rest of the week free.

 

Finding it hard to breath

Today I had to go to the doctors again! For about a week I have been feeling unwell. The last four days it has felt as if I had something in my ear. I have had trouble breathing, and my joints were so painful that even my bones and muscles were hurting. Then the last three days I have wanted to sleep all the time, not wanted to talk to anyone, and have not had any energy. I have not been out of the house for 5 days until today, partly because I was so drained of energy.

I had wanted to wait until I went to London on Monday to see my specialist because I have got to the stage where I do not trust other doctors to do anything. 

But today I was finding it so hard to breathe that I had to admit to my husband how bad I felt. Even then I did not tell him how long I had felt like this or how rough I was feeling.

I rang the doctors’ surgery about mid day and much to my surprise I did not have to beg or talk my way into an appointment I was offered one for six hours later. 

I managed this afternoon to go and do some food shopping. The pain was awful. Shopping is supposed to be second nature to women, but when every step feels as if you have red hot knives piercing your joints it is hard to concentrate on what you are trying to buy. But I managed to get everything I went out for. I also managed to get all the way around the shop, but as I said before the pain was unbearable.

Tonight I went to see the doctor. I did not see the one I usually see, but as all three doctors are good I was happy to see the lady doctor today. She listened and did not make me feel as if I was being a pest, or that she did not care. It is so hard to talk about how you feel because most of the time you know the other person has turned off. But then again if you keep trying to be brave and not worry others you have to accept that other people will not understand how awful you feel.

The doctor looked in my ears, because I had told her they hurt. Then she listened to my chest. I was surprised by how thorough she was. It is a long time since anyone has told me to say 99. But I duly did as I was told and said ’99’ each time she put the stethoscope on the back of my chest.

Apparently she could not hear good ‘air sounds’ on the right side of my chest. I was asked if I was allergic to antibiotics and then given a prescription for them. She said that I needed to come back next week for her to listen again. The problem she had was that she is not in for some of next week. When I mentioned that I was seeing my consultant on Monday she said that I should ask him to listen. I have to explain what she said about not hearing the air movement on the right side. She said he might want to do X-rays and tests. But for the weekend I am on antibiotics.

Now I know why I am so tired and feeling so rough. I seem to have an infection. 

In some ways it is a relief to know it is probably an infection. Because it is so hard to feel this bad ALL the time. I don’t like to moan and admit to how bad I feel. I certainly find it hard to tell others how I really feel. An example of this is that tonight I rang my parents to tell them about the doctor’s appointment. Mum answered the phone and told me she was messaging with my nephew and his partner. As they had a baby a couple of weeks ago, when mum asked if it was something important, I said no.

 

Going from pillar to post

Some days you cannot help but wonder what life is all about. I do not want to sound maudlin nor full of self pity neither do I want anyone to assume I am depressed. I am just fed up with the system that seems to put obstacles in our way. As those who read my blog realise, it has been an eventful journey for me to claim disability benefit. It has been so difficult that I have considered giving up. The 23rd of December 08 saw me in floods of tears when I got a letter saying that I was being turned down for the third time. But being a stubborn sort of person I decided that I would not give up and that I would take matters further. So after two emails to my MP he is now investigating if he can do to help me with my claim. I have this last week received a letter from DWP telling me that they now accept that I cannot manage stairs without help nor can I cook a meal for myself. So they awarded me low rate care. Nothing though for mobility which when you consider that I cannot walk up and down stairs safely on my own because of my joints and the pain I am in, also the reason I cannot cook is because I cannot bend and my legs give way so that I am considered to be unsafe carrying hot pans. So if it is my legs and back that stop me being able to do some things why is it not accepted that they also stop me walking? Today I got a new problem. I was up at 3:30am due to the amount of pain I was in. It took me 10 minutes just to get out of bed as every movement sent pain searing through my body. Once downstairs with a cup of cold water, and the TV on I waited for the rest of the family to wake up. I have not felt well for a few days and my memory is messed up. Also I knew that something was not right as I was typing in anagrams again!!! Last Wednesday I tried to find out why I had splinter haemorrhages. There were about 5 and on both hands. The specialist always looks for them when I go to London and he had told me it was a sign of clotting. I have not had any since I was on warfarin, but last week they appeared under my finger nails on both hands. I tried to ring the clinic but all I got was an answer phone and a message saying that they could not guarantee to return the call for at least 24 hours. So I rang the anti-coagulation clinic that I attend. I was worried because I have not had my INR (the test they do to see how sticky the blood is) for 6 weeks due to my appointment being cancelled because of the weather. They did not know what I was talking about. Splinter haemorrhages are caused by clots in the capillaries and yet a sister at the anti-coag clinic actually suggested that maybe I should go to my gp and ask for antibiotics! I then tried ringing my gp with the hope that they would be able to sort things out for me. I had to wait two days for an appointment and then was told that I would have to go to the hospital for a blood test. I had an appointment at one hospital and asked if I could go there instead. It is 10 miles in the opposite direction to the one that I have to go to for anti coag clinic. I was told that it would take longer to get the results but of course I could not manage to go to both hospitals on the same day. The lady who took blood did what they all do and ended up trying in both arms and twisting and pushing the needle in and out. She assured us that the result would be with our gp on Friday afternoon. We had been told by the gp that the results would not be there on Friday and so we would have to wait until Monday. Monday came, no results, Tuesday came again no results. So today (Wednesday) I rang the surgery to see if they had got my results. After all if my INR was too low then I was at a higher risk of a clot. The receptionist was really helpful and suggested that if I rang back in an hour she would actually ring the lab and see if she could get the results. I duly rang back at 5 to be told that my INR was 0.3 lower than it should be. I asked if I should take a bit more warfarin and was told to ring back in another hour after the gp had finished surgery and would be able to answer my question. Before the hour was up the receptionist rang back to say that as I am under the anti coag clinic then the gp could not change my warfarin dose. I did try to ring the clinic but there was no one there, so now I must wait until tomorrow. Such is the life of someone with a chronic condition. No one actually looks after you as a whole person. Each different clinic/doctor tells you to go and see someone else. All the while I am sitting here feeling awful. Lupus is flaring and I have mouth ulcers, joint pain so bad that my meds have not got rid of it. If I were a child I would have a paediatrician who would look after me as a whole person. Why is there not a similar thing for adults?