But you look so well!

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.

I made an appointment to see the nurse because I have not felt so well for a few days. I was hurting and more worrying was having breathing problems. It just felt as if I was in an airless room all the time, there never seemed to be enough fresh air and I was feeling bad when breathing because of it. The there was the sleeping. I could not stay awake. I just kept falling asleep all the time.

The nurse checked my INR as I felt like I did before I went onto blood thinners. My INR was actually just over target at 3.6 so they doctor said to stay on the same dose of warfarin and come back in 4 weeks unless of course I felt bad. After getting the INR reading the nurse has to go and talk to the doctor to see what he says to do. He also sent a message via the nurse that if I do not feel better in a few days to make an appointment to see him. I do wonder if I might have a virus at the moment. Other members of the family are or have been unwell, also I take morphine so would I feel the same symptoms that one normally would with things like throat infections?

Today yet again I have got up and am so sore and tired. It is 11am and I have already had one nap. Got to stay awake this afternoon as I am meeting a friend for coffee. But what I really want to do at the moment is to go to sleep.

I have also sent a friend a text message today as she is getting married. We were invited to the wedding, but it is about 6 or 7 hours drive away and I am such a bad passenger that I would not cope with such a long journey. If we tried the train I am sure it would cost a lot of money, and I have never been on a plane without being sick.  Also the cost would have been about £80 for petrol. If we had gone on the train it would have been over £300 and that was if I had a disabled persons railcard without it then we were looking at nearly £500. The last option was  to fly there and that  would have cost us about £200. The costs were for two of us to go, but it is so much money.

Yesterday I came across a new blog http://hospitalnotes.blogspot.com/ it is the blog of a man who is stuck in hospital on traction. Some of the language is colourful to say the least, but it does show the frustration he is feeling. He also has a guessing game on his blog. The man posts a photo of the meal of the day and gets people to suggest what it was. It is not as easy as one would expect.

Today I was planning a lie in until my husband told me he had to go to a tutorial for his course. That meant he needed to get a train about 9:30 and it is about half an hour walk to the station for him. We were woken up by the milkman’s truck at 7 anyway so all thoughts of a lie in went.

As it was my husband walked to the station because he wanted to walk. I had got up in time and so I had a lovely quiet time whilst the kids were asleep.

Todays post had a letter for me about my next course of acupuncture. I was glad that it has finally been organised but a bit sad that the three sessions are almost a month apart. I get the first session on my second sons birthday and the last one is on my birthday. I will have to see if my parents would like to meet up for lunch as the hospital is about half way to their house. It depends on what they are doing though. Otherwise I will be able to do Christmas shopping.

I drove to pick him up about 1ish. He helped me to get a bit of shopping and also to sort out ordering some audio books from our library. The shops where the station is have most things but not everything. So when our son was due to finish at his part-time job at the supermarket I drove to get him. The supermarket is only a mile away but our son gets tired as he has chronic fatigue so we always make sure someone picks him up.

I got the rest of the shopping I needed. We also were able to get some new dishes for the oven. Our last one broke yesterday. I assume that pale blue earthenware has gone out of fashion as they were on special. We bought two as they were such a good price.

When I got home, with our daughters help, I manged to prepare potato wedges, roasted veg and home made burgers. They are known in the family as mummy burgers from when my mum used to make them. It is a simple recipe of mince and stuffing mix with an egg and water to bind it. We also made some with quorn mince. So we had a choice of veggie or meat ones.

The meal was a success. I am really hurting, but it is a lovely feeling that everyone enjoyed it. The whole family told me how much they enjoyed the food. I had to have help as it hurts so much to cook things. But it is lovely to see them all enjoying their food.

Now I am going to spend the rest of Saturday with my feet up watching TV. One of my favourite programmes has started again tonight after a break over the summer.

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.