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.

 

Is it pride?

After the last week I am so tired, it is like my batteries are almost flat. Also the pain I am in is indescribable. Yesterday we went to a wedding. I was not sure if I was going to go and when, Thursday night I realised that I did not have anything to wear it seemed like I was  not going to go. But Friday I managed to get up and showered by 8am and then go to a local store that opens at 8. I could not wait for the clothes shops to open at 9 because the wedding was at 10. I got an outfit and was home before 8:30, this included time to try on the clothes.

We got to the wedding at 9:45. So I had time to talk to friends. One lady at the church has some of the same health problems I do, but we also have some different conditions. She talked about how she is going to have to go to London (about 30 miles) every fortnight for 18 months for physio. The physio is to induce the awful dizzy/vertigo episodes she has so that her brain can learn how to cope.

Whilst talking I told about how difficult it was shopping on Wednesday. They told me that they go to the shopability (I think that is what they said it is called) and hire an electric scooter.  Now whilst I know it makes sense, and if I were talking to someone else I would suggest they did it, for me it is not something that I feel right about. After all I know I can walk, albeit slowly and with pain, I can walk a bit. To me these things are for those who cannot walk. But of course that is not right. They are for those who struggle, who find it difficult. Well that is me.

I spent a lot of time last night thinking about these scooters. Should I use one or not? Is it just pride that is keeping me from using it?

I know that it is logical to use a scooter, after all the other option is to never go to this shopping centre again. But having to face reality of how much worse I have got is hard. To face that pain and problems with mobility are the future when I try and do things like going out, is not easy to do. In my head I am still as able as I was five years ago.  But of course when I try and do things reality shows me that I am not able to do things I want to.

It is hard to accept some changes.

 

Facing Facts

Yesterday I went to a local shopping centre. It is what Americans call a mall as the shops are all undercover. It is a while since I was last there and I assumed that I could sit and have a coffee whilst the kids went off a shopped. But of course our daughter needed someone to help her. She was able to chose what she wanted and to try it on, but just did not want to shop alone.

Trouble is that meant I would have to go around one shop with her and stand and wait whilst she tried on clothes. How long does it take to try on a pair of jeans and a shirt?

We got that and got some underwear and went to pay. That was when she told me she needed a pair of shoes and there were none in that shop that she liked. I thought we had sorted out that she already had some suitable shoes.

I went to a shop to look for something for me as I have two weddings to go to. One tomorrow and one the Saturday after, so in the space of a week and a day I need to wear something at both weddings. Anyone who knows me would know that my wardrobe consists of jeans and tops. I am a jeans and t-shirt woman. I have always said that if I were to marry again it would be jeans and t-shirt for me. Guests could wear what they wanted including the minister. I would want a church blessing. But for me comfort in clothes is important, and I do not feel right in a skirt.

I was so tired by the time I got to the shop I wanted to look in. Everything seemed so expensive and I just could not get enough energy to try anything on so I went to get a coffee. At the refreshments area I realised that I had a bottle of drink in the car so why not go and sit there? After all it was outside, so plenty of fresh air, and I could lay the seat back.

That was when my mobile rang. Daughter still wanted shoes. We went a couple of shops, but they were either not the right style or way out of our budget. Even in the sale they were £60!

We found a pair of sandals that ‘would do’ and I went to sit down in the car whilst she paid. I felt bad leaving her to queue up and pay as I know she does not like to do that. Then she was going to have to go to another floor for the exit. Then find the car in the massive car park. So I was really relieved when I found my eldest son in his wheelchair at the top of the escalator. He sat and waited for her. Eventually all the kids were back in the car.

We had intended to go to Ikea to get some new plates. We really need new ones as our plates and bowls are getting chipped and look old now. But I was in so much pain and exhausted that my eldest drove us straight home.

He made comment about half way home. I had not said anything and he thought I was asleep. I am the worlds worst for back seat driving and am usually making comments about how close he is to other cars. I know that my spacial awareness has changed with APS. It is still safe to drive as I think everything is closer than it is. So apart from being more careful than before I am not about to scratch into other cars because I do not know how big my one is.

Last night three of the kids went out with a list and money I had given them and we all had fish and chips. Even thinking about what to cook was too difficult.

Our daughter asked today why we had fish and chips last night. She is used to it being a treat as when you are buying for six people it is not a cheap option. She was really concerned when I said it was because I was feeling so worn out from shopping.

It made me sad to realise how difficult ordinary things that I used to take for granted, have become. I was trying to work out what I could do to make things easier. Of course there is an option to borrow a wheelchair but of course I find that an unpleasant option. You see I know I can walk, albeit not far and not without pain. But to me wheelchairs are for those who cannot walk at all. Even though our son uses a wheelchair when we are out and he can walk, it still seems the wrong thing for me. Almost like I was making things up. The other option is to not go out. that again is not an option. I will not let this trap me.

Today I am going to our local town to try and get something to wear at the weddings. If I don’t get something today I will not be attending the wedding tomorrow. The difference is that my husband is coming with me. I can hold his hand and he will carry bags for me and make it as easy for me as he can.

As for what to do next time. I just do not know. I have to go in a month to get our daughter new school uniform. I know I could send her with someone else. But who? Her dad is a typical man who does not like clothes shopping, and anyway most girls want a female with them. I could ask my mother, but then mum would feel responsible for what our daughter bought. She might worry that it was too short/reveling in other words wrong.

Also it is something that I want to do, mother daughter shopping can be fun. I do not know how I will solve this problem. But I will have to sort out

 

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.

 

Having to ask

Something I have never been good at is asking for help. So now that I need help it is so difficult, even to ask for a cup of tea. I sit here wanting a drink and knowing that I can get up and can make one for myself but that it will hurt. So being me I go and make it, hurt myself and then get fed up.

The way my brain works is that if someone wants to make you a drink they will offer. I am well known in our house for always having a large cup of tea on the table by me.

Then there is the times when someone offers to make you a drink, but then forgets that they said they would make it. If I ask then I feel as if I am nagging. After all whatever it is they are doing must be important to them if it causes them to forget that they were making me a cup of tea.

It is hard to adapt to a new way of life. To always have to rely on others for things. Not able to go out unless I can use my sons car. I qualify for a car myself now, but have some forms that need filling in. I need some help to finish it off as I need info from other people. But there is a limit to how many times you can ask. Also if the other person is busy then one has to wait until it is a convenient time for them. But on the other hand if I don’t keep on nagging then is it my fault that the forms have not been sent off? Is it unreasonable to expect others to remember that I need help with a form?

I find it so frustrating to keep on having to rely on others to help me. I find it even harder to have to do things in someone else’s timing and not being able to just do what I want when I want.

Gone is the ability to just go out when I want to. I have to find out if my son is using his car, or if I can borrow it.

Today I needed to go out shopping to get a present for the teacher as school finishes on Friday. But as my husband was going out later he did not want to go when it suited me. So I went out with out sons. But of course they had their own plans. So I ended up having to cope with shopping and then put the small amount of shopping in the car. It was only a couple of bags and nothing heavy. But by the time I got home I was hurting so much. My back was causing me big problems because it hurts so much.

One day I might get used to my limitations. I often wonder if I would find it easier if it was something else wrong with me.

 

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.

 

Is it the weather or a bug?

Our daughter came home from school with the news that two girls in her class have both been confirmed as having swine flu. My husband had already rung me to say that the local paper was carrying a story that the school had girls with the virus. It is the only school in the area as far as we know. But the treatment has changed, no longer are schools shut to contain the spread. So the girls are not getting an extra couple of weeks off for the summer holidays. The only way that the school will be shut is if too many staff get it and then there are not enough staff to run the school.

We have already got a cold going around the family. Everyone has runny noses. Some have headaches, some sore throats, some achy joints. All of us have more than one thing, but then joint pain is nothing new to me or our daughter.

Today though I have had a lot of problems with my hands and wrists hurting. One little finger is noticeably bigger than the other by the middle knuckle. I have assumed that the change from hot dry weather to cool and wet is causing my arthritis to play up. I have ulcers in my mouth, that will be the lupus playing up. Then there is a lovely lump on my inner elbow where the blood was taken yesterday.

For the next few days I have nothing planned, apart from food needing to be bought. Our daughter is making a cheesecake on Friday so I must get the ingredients tomorrow. Might get my husband to help me so that we can fill up the freezer. He can do all the lifting and carrying, I will chose and pay.

I have spent some time this evening looking at what course I am going to do next. I need to ring the university in the morning as there is a course that I could do but it starts this month. If I do that one and pass it and assuming I have passed the one I finished in May then I will have my degree in January. Then one more course and by the end of next year I could have an honours degree. What I will do after that I don’t know. Whilst it is hard work studying when you feel bad, it does give me something else to focus on. I will have to see what I can do after that.

 

Busy doing very little.

Today I have made myself catch up on some paperwork that I had been putting off.

Firstly I did some financial forms. If I had not done it soon we would have ended up with our income being stopped. I made a phone call and the forms were filled in over the phone. So that was one job done.

Secondly I decided to make the phone call my GP had suggested. The anti coag clinic I was attending have been very difficult and would not do a finger prick INR test. They also would not agree to me self testing, this was despite my specialist saying that he thought I should do this. He decided that I was a good candidate for self testing because he realised that I take responsibility for my own health. I make sure that I get the correct treatment. But the anti coag clinic I was attending would not allow me to have a finger prick INR and insisted on a full venous sample. I rang them about two weeks ago and said that I was not allowing them to do a venous sample on me any more. Every time I end up looking like a junkie with numerous holes and bruises on my arms. The end result was that they said unless I did what they say they would not treat me. So my consultant in London is not taken any notice of. He is a consultant at the centre of excellence and yet the local haematologist is able to over rule my consultants treatment. This is wrong and I just cannot accept that someone who has never met me can over ride my specialists treatment. It gets worse when I found out that the local doctor who is over ruling is the one who did the tests for APS in 1999 and even though I tested positive did not do anything. No second test, no treatment, no telling me that I had APS. She just let me continue to walk around with a high risk of having a blood clot. I had had small clots and also a pulmonary embolism before I saw her ten years ago.

The anti coag clinic have decided that as I have been told I have ‘lupus like symptoms’ that means I have lupus and so I cannot have my INR measured by finger prick.

My GP found out that there was a local clinic, nearer than the one I had been attending that did support self testing. So he wrote to them. Trouble is that they have decided to take the same stand about lupus and finger prick INR tests. So when I rang them today they said they will not allow me to go there either. I got them to agree that if I could get my specialist to send them a letter saying he was happy with a finger prick INR test, then they would accept me. After all it is only a mile to that hospital not the 8 miles I have been driving.

It took me about 5 tries at ringing the specialists secretary, but when I got through she thought it would be OK for my consultant to fax a letter agreeing to finger prick tests. I am not going to get my hopes up as too many times recently I have thought things were being sorted out and then they were not.

The last thing I did today was to book a blood test. I have not had my INR done since May, about 6 weeks, and so tomorrow I have to go and get a venous blood test. I am a bit worried about it. For many years I had a needle phobia, but managed to cope with it when I had the PE as I had so many blood tests I had to calm down. However the treatment I have had at the local anti coag clinic has got me panicky about needles again. I will not let it beat me and will get the test done. But I fell myself getting stressed. That annoys me as I see it as being  a wuss and I want to be stronger than that.

The weather has been cooler and wetter today than the last week. My knees and hips and back have been really sore today. But not as bad as my fingers. If this carries on I will have to use the software I have on my computer that means I can speak what I want typed and the computer types it. So far the accuracy has not been good. But then again my typing is not always good. Some days I type anagrams. Been doing that a bit with this blog tonight and keep having to spell check and change things.

Tomorrow I have the blood test booked, but apart from that I have a restful day.