I have not posted for a long time, but felt that the time was right to blog again.

Last year I managed to get myself off the morphine that I was taking every day. I thought it was helping my pain until Saturday when I did not take it. I woke up on the Sunday feeling like I had flu. That was when it hit me that I could not just give up these strong painkillers I was suffering withdrawal. So over the space of a few months I gradually reduced the medication and am now free from addictive painkillers. It made a massive difference to my outlook on life. After I had given up I had an appointment with my APS specialist. She congratulated me on being able to come off the morphine and then dropped the bombshell that morphine is ineffective for joint pain.

Basically I had been doped on strong painkillers that were not doing anything for me!

I have also set up a charity in my home town. We provide food parcels to people who are having a financial crisis. When I first suggested to people that it would be a good idea there were two opinions. One mainly from those who worked in social services and other support agencies said wonderful we need that. The other view was that we live in what is seen as an affluent area so surely no one needed food parcels. Well now we are up and running I can assure local people that even in affluent areas there is a need.

A lot of time over the last 4 years has been devoted to my studies, and got my degree at the end of last year. I had vowed that I would not continue my studies but I have just signed up for another course to start in October.

Studying and helping others has really helped me to cope with my health problems. I am still in the same amount of pain that I was in when I posted before but now I see it as part of life. Now it is a sign that I have done something and not just sat in my chair feeling sad. There are days when I would class the pain as agony. Last night was one of those times, but eventually it does calm down.

I also had surgery last year. The surgeon came to see me before the op and told me what he was going to do and what treatment I would get post op. The post op care involved medication that would have been dangerous for me. The surgeon had either not read my notes or did not understand lupus and APS. I stood up for myself and told him that he could not do what he suggested. Much to my surprise he listened and changed the operation that he did.

The nurses all commented that I obviously knew a lot about my health conditions and they all said they were impressed. But the way I see it is that many doctors do not know about APS and so I need to know to keep myself as well as possible.

People still comment that I look so well. Sometimes I tell them that when lupus is bad you often have a rosy glow to your face and look well, this is actually not a good sign, but often I just do not bother telling people how I feel. I learnt very early on that many people ask ‘How are you’ but often they do not really want to know. This lesson was learnt when I was asked how I was and when I replied ‘Actually I feel really rough and am in a lot of pain’ the other person said ‘good good’. She was not listening, not because she did not care, but because she did not understand.


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.

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.

I was given a bit of advice the first time I went to pain management clinic, it was listen to your body. Well the last week I have not done that. I had a lot to do, and even though my husband told me to, I did not delegate the jobs. He told me to slow down and delegate but I felt I should be doing certain things.

For example none of the men in our house can appreciate that not all brown shoes are the same. Our daughter needs brown school shoes. Hers must be the only school that demands brown shoes. All the school shoes in the shops are black. the brown ones either have heels that are too high or they are just not the right style. She wants ballet style slip ons in brown. But no where sells them.

When we went school uniform shopping on Monday we looked for brown shoes. We got her skirt and blouses from the school uniform shop. Her school has a distinct uniform and the only shop is about 40 miles from the town were we live. We live one mile from the school but have to go 40 miles to go the only shop that sells the uniform!!  WE went on the train as 40 miles is too far for me to drive comfortably. It was a lovely day out, my mother met us there and we had a girly shopping day.

There were no brown shoes that day.

On Tuesday I took our youngest son to sign up for his second year of his college course. That was just a 10 mile drive so I took him in the car. I was able to sit in the car and wait whilst he went and signed up. He is 18 now so, as an adult, he is old enough to sort out signing up for his course himself.

After he had finished at the college we went to the town and got some pens and stationary he needed. I got a bit for my daughter, but as she is rather particular and she was not with us I did not get much.

We also went into a shop to get my son some shoes. He is not at all fussy. He takes a UK13 and is so pleased to find shoes to fit that he will buy what there is rather than worry about what they look like. He was over the moon to get two pairs of shoes. That is so rare but they were in the sale and the two together cost the same as one pair usually do.

Yesterday (Wednesday) my husband had to go to the hospital about 10 miles in the opposite direction to our son’s college. He had to collect some equipment to do a sleep study. So we made our daughter come along as well so that we could shoe hunt. After the first couple of shops I suggested that hubby and eldest son sat and had a coffee whilst she and I looked at shoes. Hubby was convinced that we could go into one shop and get brown shoes for school. I tried to explain, but it seems that all the males in our house feel the same way.

I eventually managed to convince hubby that because almost every school says black shoes then getting brown ones is difficult. The ones we can afford are usually fashion shoes and the heels are too high. This means that even if our daughter were not fussy it would still be difficult.

Today our daughter needed to be taken to a friends house, about 20 miles away. We offered to do the driving as another friend who lives near us was also going. I drove the girls there and arranged that our eldest would collect the girls. The journey was a nightmare, we were stuck in a long traffic jam caused by road works.  A journey that should have only taken a couple of hours at most took three hours. We had to drop off the equipment back at the hospital as well, but we kept on getting stuck in traffic jams caused by roadworks.

This evening my eldest went off to get the girls and I was so relieved because my knee is so painful I cannot walk. Had he not gone we would have had a problem getting the girls home. I would maybe have had to ask the other family to fetch the girls. The mother is always doing lifts and I wanted to be able to do our share.

I am now sitting watching TV and trusting my husband to cook my food as I cannot weight bear on my left leg. My husband is not known for his cooking skills. The kids joke that he can burn salad.

I thought that I could maybe push myself this week and that if I tried hard I could achieve more. But it looks as if the nurse was right and I should have listened to my body.