Life today

Sorry it has been a long time since I have written anything on here. A lot has happened in the last few months and I haven’t been able to get to the computer so easily. I have done so much in the last 7 weeks I don’t know where to start.

 July

It was the end of July, after a busy sports day, with a lot of walking to and from the field and our room. I came home and sat down to relax my legs were aching badly but I had done a lot of walking that day so that was to be expected. However, when I stood up again I had a very sharp pain shoot down from my left knee right down to my foot. I shouted (probably quite loudly lol) and my partner came asked me what was wrong. I tried to walk but it was too painful to put my full weight on. I hobbled back to the sofa and tried to relax (I have dislocated my knee 4 times before and just the thought of it happening again does make me a little tense and panicked) I watched the TV for 10 minutes to try and take my mind of the pain and give my leg a chance to relax. After this I told myself to be brave and have another go it might have just been a muscle or something. This time I managed to hobble across the room but I still could not straighten my leg without terrible pain. At this point I realised I may not just be being silly that I might have actually hurt it again but told myself to relax and give it time. I called my mum a little upset but trying hard to stay calm. We decided to wait and see how it was in the morning.  

In the morning I was still unable to put weight on my left leg and had slept with it propped up on a pillow.

We went to A & E where the doctor said that I had dislocated my knee. Although it was now back in place it had damaged the muscles and every time I walked on it caused a lot of pain. My knee was also only loosely held in place because the muscles were so weak. I was to wear a knee brace for 3 days to give the muscles time to heal. He was quite firm on this and told my partner to make sure I took it off after 3 days. He said I was not to have any crutches as I needed to keep walking on my leg to keep it strong and that I must do an exercise where I push my foot into the bed to strengthen the muscles. 

After 3 days I took the brace of and tried to start walking whilst continuing to do the exercises as he asked. My knee was still in some pain but I managed to hobble outside to put the washing on the line and continue with as much as I could. After some time my knee was still very painful and I was a little concerned as A & E had not given me any follow up appointment. Therefore I called the GP who got me a fracture clinic appointment.

At the fracture clinic the doctor said that my knees were very loose and that normal procedure if I had dislocated my knee would be to wear the brace for 3 weeks not days as the muscles would not heal in 3 days! They got me another better fitting brace and some crutches for support as I had told him that walking with my leg straight was making my back and my hips hurt. He also wrote a referral to physio and made a follow up appointment for 6 weeks’ time.  

Good things about July

My little brother and sisters 17th birthdays!  We had BBQ and lovely cake though sadly I couldn’t stay because my nephew came down with a bug and because of my immune system I couldn’t risk catching it L  

I met some Cystinosis patients in Birmingham and we had a lovely time. It took a while to organise and was a little frustrating and I began to wonder if it was worth it. However, everything came together and we had a lovely time at the Victorian village so it was well worth the time. 

We went to the beach and had some lovely fish and chips and the dog enjoyed lying in the shade of the umbrella.

August

In this time I also had a gastroenterology appointment after waiting on a waiting list for several months. I saw a locum doctor. He was a very funny with brightly coloured trousers pulled almost right up to his arms and glasses. He was however very helpful and suggested some new medication to help with my IBS and sickness and said that he would like me to come back in one month. I was quite happy about this as most the time you have to wait 3 to 6 months to see the doctor again. So I left feeling very positive.

As well as this I also had a Neurology appointment to try to get on top of my migraines. He was a very nice doctor who gave me time to talk without interrupting or hurrying me. He decided that I was having migraines (I was not sure this was what they were at the time). He decided that although I cannot take most migraine tablets because of my kidney damage that a nausea tablet 3 times a day and one other medication to help me have a more restful sleep would help prevent them. But that he would need to get advice from my kidney doctor on which one was best.

Good things about august

We had a lovely time camping in the forest for the weekend and the town was very dog friendly so we could take Gomez in most of the shops. Though it was a basic site without many amenities or entertainment we were right in the forest and there were lots of walks which was lovely and the weather actually stayed ok for once.  

September 

Today is the first day back at work and the start of the new school term. So today I have been doing planning meetings and setting up for new children. I have decided to wear a tubular bandage on my knee for the first few days that the children are back( just at work) as I am so nervous I’m going to hurt it when I am in charge of the children and I’m not the bravest person when it comes to my knees

My knees are doing much better now and I have been doing my exercises 3 times a day for the last 7 weeks and I am now walking more normally, though I am still struggling with stairs. I saw the fracture clinic yesterday who was pleased with the improvement. I was not so happy with the outcome of the appointment however. The doctor looked at my knees and managed to move my patella (knee cap) with only two fingers a lot more than he expected. He said that my knees are so loose that he is not sure pinning them would do any good. This was a little upsetting as I always thought that if things don’t improve that this would be an option. He did make a referral for me to get some knee supports but said that this could take several months.  So thought I am pleased with my improvement I am left feeling very vulnerable with my knees left how they are.

The doctors agreed to give me my migraine medication but said I must have another ECG first which turned out to be a right pain as I had not driven in a few months by now because of my knee and migraines. I got in my car and went to drive it for the first time in ages just to find the battery was flat. This was quite frustrating having only started the car a few days previously to ensure it was still ok. I looked to see if there was anyone around but decided to just start walking. I was quite lucky in that my step dad had agreed to pick me up from the doctors so I did not have to walk back.

So anyway ECG was fine and the doctors agreed to give me both my new tummy and migraine meds.

Good things about September 

My birthday! 

I had a lovely birthday. I was working so didn't go out but the children made a lovely card and my partner got me a mini electric assisted exercise bike to help my knees, an enchanted forest colouring book and a chilly's water flask to keep my water cold. My mum paid for us to go in our caravan for a week at the end of October. My dad got me an Amazon voucher which I want to use to get a new bag. I want a small bag that I can carry easy (I can't have shoulder bags any more they just end up hurting my back or shoulder) and look nice but not so small that I can't put my water in it ( I never go anywhere with out a bottle or water with in reach (anyone living with Cystinosis knows this is not an exaggeration but a fact of life) At the moment I am using a small bag for life but I want something a little more stylish.

This is a gluten free cake that my partner made me as I am on a low fod map diet. 

October

I have been on my new migraine medication and low fod map diet for a few weeks now and it seems to be going well. Its not a miracle or anything I still get stabbing in my tummy and headaches but it really seems to be helping. The migraines last for a day rather than 3 and I still get sick and stabbing in my tummy like I said but it’s a little more bearable.

The tablets have been difficult as I’m supposed to take them an hour before food which is a little hard to fit in especially at breakfast when you’re in a hurry.

The fod map diet has been a learning curve. There are a lot of things that contain wheat, onion or milk that I wouldn't have thought of. We have had to make our own stir fry sauce for instance as most have wheat in and I have to make home-made gravy as I can’t even have the wheat/diary free one as it has contains onion or onion powder. However as I said it does seem to have been well worth the effort and hopefully soon we will work out what fod maps are ok for me to re-introduce.

Its Sunday today and we went shopping yesterday and got a lot of Christmas presents and I had a lovely burger from the burger kitchen which had a whole gluten free menu, though I still couldn't have half of it as it had onions in. However, I did find a lovely chicken burger with Camembert. It was really nice, not sure if I was allowed Camembert but hay you have to have some treats in life. 

My bag from Amazon came through its not exactly what I hoped for so I will be returning it as the zip is smaller than the actual bag so will not fit my water bottle in.

I did however find this mini one while I was shopping. Which I actually quite like and the zip goes all the way along with plenty of room for my bottle. 

It is now the end of October and I have had a lovely 2 weeks of. We took my partners sister to harry potter world. Drank some butter beer and had a lovely Chinese takeaway at my nans (she also looked after the dog for us). I have been to harry potter 3 times now once with a leisure group and twice with my partner for Hogwarts in the snow and then again with his sister for the dark arts Halloween event.

At the end of October mats car started making a knocking sound and we took it to the garage and it turns out to be a complete disaster and unsafe to drive the whole of the chassis has completely rusted threw and the sound we could hear was it moving. The garage said it would be very costly to fix and would take a professional welder like a week to fix. And that it would not be worth fixing with all the other problems we had since discovered. So naturally we were somewhat annoyed having only brought the car just over 3 months ago. The car dealer refused any responsibility for this and we were just outside of the warranty. So to cut a long story short after much argument with the dealer who sold us the car which was not fit for purpose and falsely advertised the only option we felt we were left with was to sell the car spares and repairs on eBay. The car did sell but we did not even get quarter of our money back. We could have taken the dealer to the small claims court but that takes energy and right now that’s something I’m very low on and my partner didn’t have the confidence to do this. So anyway the car sold on eBay for a very small fraction of the money we paid for it.

This was not the only problem, we had booked a holiday in Cornwall in our caravan that week and my car does not have a tow bar and is far too small to tow a caravan anyway. We called and tried to change it to a static but it was fully booked. We looked at hiring a car with a tow bar but this turns out to be extremely expensive. My October school holidays were beginning to look very miserable.  Luckily just a few days before we gave up and cancelled the holiday my partners mate agreed to let us borrow his car. This was a little haste in its self as he lived an hour away and had to borrow my little car for school runs and temporary insurance and things. Anyway, We got to go on holiday to Cornwall in the end and I was very grateful this made the whole situation seem a lot better. No we still didn’t have a car, and I didn’t know what we were going to do about it, but we got to go on holiday and forget about it for a week.

So we went to Cornwall the weather was not great it rained a lot but we did get a small break for one of the days. We visited the Eden project, the lost gardens of Heligan and Jamaica inn. We treated our self’s to lunch at the Eden project, we had the dog with us so couldn’t go in the biomes but we still had a lovely time. The camp site was lovely. The pitches were a little silly as we paid for hard standing which turns out to be in the middle of a muddy patch of grass anyway so seemed a little pointless. However the facilities were lovely. There was a club with entertainment, bingo and games/arcade room, an indoor swimming pool, a separate restaurant and lots of take always. Also a centre to hire bikes and go carts.