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

 

So tired

Last night was spent on the sofa again! It has been a busy couple of days and the weather does not help and so when I went to bed last night I could not sleep. The biggest problem is my knee; it feels as if it is loose and is trying to bend the wrong way.

After a quiet weekend, on Monday I went with my eldest son to a hospital check-up for him. The hospital is about 22 miles from home, it is the only place that this consultant works, and when you find a good doctor you put up with difficulties so that you can see them.

This consultant is really good and he understands both Robert and us because he has a disabled son himself.  He is interested in the patient as a whole and sees quality of life as important as the surgery. So he is not intending to do any planned surgery, and has said that we should contact him if Robert needs to be seen again.

I do not know why but I have a problem when I am a passenger in a car, it feels as if we are going to hit the curb, or other cars parked beside us. It has got to the stage where I am almost unable to go in a car as a passenger anymore. It is both annoying and frightening for me and must upset the driver as they can see me tensing and pressing my nonexistent brakes.

Because of this I drove both to the hospital and home. We also visited my parents, something we do not do often enough, as they live near the hospital.

My husband and daughter got home shortly after I did and it became obvious that she was not well. She had been sick over the weekend, with a temp of 102. But on Saturday we got a letter from her school saying that her attendance was only 88% and that this was a problem. So on Monday we sent her to school in the expectation that they would realise that she was sick and send her home. But no they decided that we had sent her and also her attendance was not good enough so she was made to stay and cope. By the time she got home she was in a bit of a state. I ended up taking her to see our GP who diagnosed a bad throat infection and gave her antibiotics.

So Tuesday morning I rang up the school to say that she would not be there and passed comment on how I felt that they should have sent her home. The lady I spoke to felt bad about it, apparently the government say that schools have to check attendance and send letters to parents whose children have less than a set percentage. The problem is that our daughter has had a bad term and seems to have been sick a lot. We are concerned enough without having that letter sent.

Of course her attendance is going to be worse now because she is sick again.

Yesterday I had to do a bit of shopping as well as going to another hospital for my blood tests. I had decided that this time I would be a bit more forceful about how and where they took blood. We got there early, as I had been told and this time when we handed in my anti-coagulation book my husband pointed out that it said VENOUS SAMPLE and also on the same page was written FULL SAMPLE.

So this time they called me in first and the nurse who managed to get blood last time was ready with the needle. I showed her where she got the blood last time, the same place that is used when I go to London and so in went the needle. But no blood, she pushed and pulled and twisted, but all that came out was a small dribble of blood. Nowhere near enough for the sample. So then she looked at the other arm. She kept apologising to me, but I know she was doing her best. Eventually she got blood from my right arm. So now I have two bruised arms. It is so frustrating that even when blood will not come out of my arm I still get a big bruise. But the good news is that they did not try to get it from my hands. I told the nurse that I would not allow them to even look, let alone get a needle near the back of my hands. It hurts there and they never get a result, so why let them try.

We had to get a bit of food shopping after the hospital. We went into the town and went to Primark. I needed some nightclothes and Michael wanted some socks. We got his socks and the fleece that he wanted, but no night clothes for me there. Although we did get our daughter some gloves, and socks. We also got one of our sons a Christmas present, a bit of a joke one.

Then we went to Asda, by this stage I was hurting and was dragging my feet. I did not use my stick, because my hand is causing too much pain. So I held my husband’s hand. I prefer to hold him because he gives more support than a stick and also I feel more secure.

We bought a Christmas tree yesterday, much to our daughters upset it is only 6 ft tall and she wanted us to get a 7ft one, it is also a bit too narrow for her liking! I got some new clothes there and we got the food that we had gone in for.

By the time we got home I was exhausted. The only reason I managed to drive home was stubbornness, that and the knowledge that I was the only insured driver in the car, oh and of course the silly problem that I have with being driven.

The kids cooked tea last night and also put up the Christmas tree. It looks a bit bare at the moment, and I am told that it will not be decorated fully until the weekend. For as long as our daughter can remember the tree has gone up just before my birthday, so it cannot go up until the weekend as far as she is concerned. The tree is ready lit, static white lights, not the flashing multi coloured ones that I like. But apparently we can have them as well. So for now we have this bare tree with white lights in the corner of the room.

 

It costs more when you are sick

I did not go out today, yesterday took it out of me, so I have had a quiet day at home. Now that the weather is getting colder it presents a dilemma to many people with health problems.

Do you put the heating on and worry about paying for it, or do you leave the heating off and be cold? 

We are already paying £220 per a month for gas and electricity. Putting the heating on will mean that this bill gets worse. As it is we have problems paying this amount, and between needing the heating on and the fact that fuel is getting more expensive it is causing many people problems and it can only get worse. I am sure that this winter will see more people being sick because they cannot afford to heat the house, or we will see more people getting into problems with the gas and electricity companies. 

When you are sick you need the heating more than you would if you are able bodied. One cannot go out easily so many of us are stuck indoors a lot of the time. Also if you are not active you get colder, because you are not moving around to warm yourself up. 

My birthday is near to Christmas and this year I will probably end up with thermal clothing, not for wearing outdoors but for in the house. It is not something that most women of 45 imagine having for Christmas.

Added to the problems with the fuel bills food prices are rising by the week, sometimes it feels like it goes up daily. 

Because I am not able to get out everyday I have to rely on others shopping for me. They buy what is on the list whereas I would buy what is on special offer. Also for someone who is feeling bad, cooking is hard at best and some days impossible. It costs more to get veggies that are prepared. Also I am sure that hey have less vitamins in them as they have been peeled for hours, if not a day or two. But you have no choice sometimes. So another situation where it is more expensive for people with health problems to live day to day. But unless you can convince the DWP that you are telling the truth you do not get any extra money to help with the extra costs.

Even if you can get DLA does it really cover the cost of the extra expenses you have? I think not. 

Another problem with finance is that unless you know the system it is so difficult to get the help you need. I believe that everyone who is found to have health issues should be offered a visit from a benefits specialist. This person could then help you fill in all the appropriate forms. For example how many people know that you are able to get your travel expenses for hospital appointments? It is means tested but we have been spending money for trips to hospitals without knowing we could get it paid for us

 

Pain today

It has been a bad day today because of how much pain I am in .

Yesterday we got the metal leg things that raise the sofa 3 inches so that it is at the right height for me. It is odd to have the chair higher but it does make it easier to get up from the chair now. 

Last night I had to take my morphine an hour earlier. Then all night I kept waking up in pain. My husband tried to help by gently rubbing where the pain was worst.

I got up this morning still in pain almost unable to walk for pain. But my meds are downstairs so I managed to get downstairs.

The pain has been there all day, despite taking all my meds.

This afternoon I wanted to go out to get my mum a birthday present. So I got a lift into town, and all I did was shop in the local Sainsbury. I did not get her a present, I could not make up my mind which slippers she would like.

By the time I got home, after being out for about an hour, I was in so much pain I just wanted to lay down and shut out everyone else.

I am ashamed to admit that I snapped at my kids. I could not cope with other people. Eventually I took my tablets over an hour early again.

At the moment 3 hours after taking the morphine, I am still in a lot of pain. At least I can sort of manage to sit at the computer now. If it were not for my computer and the TV I cannot imagine what I would do.

A friend of mine has Menieres and so she cannot read or watch TV when she is feeling bad. That must be so awful. What do you do to try and take your mind off of the pain and difficulties?

This has taken me nearly an hour to type as I keep having to take rests to cope with the pain.

But I cannot see what else I can do, if I take any more painkillers I will be zombified.

And the DWP don’t think I need DLA.