DX.

We had our CAMHS appointment this afternoon, my youngest was with us and she went to have her meeting with the speech therapist, as you know this was that last one before we receive  the big diagnostic report. Her dad and I were called in when they were finished it took about forty minutes before they call us in. Of course for every appointment I have taken my iPad for something to do and have never needed it, humm yes I needed it today and never took it. I am so silly at times I am sure if I had taken it I wouldn’t of needed it.

My daughter went to the toilet on our way in, I am so glad that she did as before she entered the room we received the diagnosis that I wasn’t looking forward to, she is on the Autism Spectrum and I am devastated. I shouldn’t be I know I had my suspicions and it was me that started this journey off to get the help that she needed. But having it told to me that she is on the spectrum hit hard really hard I just burst into tears. Not for me but for her as my head is now full of questions of what is going to happen when she gets older she is already having problems with things that she can’t get over. What about other things will she have a relationship with someone will she have a family will she be able to work with the issues that she has (she doesn’t like anything on her hands). I know that I am projecting far into the future, but as a mum you want your child to have everything.

I also for the first time cried about all of this I hate doing that and I know that Eilidh saw that I had been crying even though I did say that my contacts moved a bit. We are going back in a few weeks to ask the questions that we have, ones that we can ask when my daughter isn’t there. We also have to apply for benefits for her to help with things not that I care about the money I don’t but it will help her get things that she need to help her with daily living. I won’t be keeping her money it will go into her account for her to use so if she needs a new lap top we can go out and get one without worrying about the money for it.

I do wish sometimes I had a close friend that I could talk to and tell them how I feel. I do feel very alone and very frightened just now.

Who Stole My Daughter!!!

OK I’m not sure what is going on but I’m sure that aliens have stolen my youngest daughter and replaced her with someone else. To let you understand she is ASD, for those of you that don’t know that she is on the Autism Spectrum. Many of these children struggle with many everyday things in life that we all take for granted. Just lately things are being put into place for her to go up to high school. They call it here in Scotland an Enhanced transition, my daughter will go into high school for one morning a week to let her get use to the school and let her find all the places she can go where it is quiet and get to know some of the support staff that they have in the school. It is a great idea and it, I hope, will help her a lot once she starts in August. It is going to be a big step for her as she is moving from a school with only 79 pupils to a school to about 1,000, it is going to be noisy and busy, both things she doesn’t like.

But I digress back to the title of this post, in the last few weeks I have stopped dressing her and let her dress herself in the morning’s with me guiding her to put things on and on the right way. I have also been showing her with gentle guidance how to get her breakfast and take her plate through to the kitchen when she has finished. All very simple things I hear you say NO this has been many years to get us this far. This has seemed to started a lot of things to happen all at once like making herself a cup of tea, she loves tea, putting on her own shoes and making her own bed, going for a shower without me doing the normal things she needs to get her there. The cups of tea are not a problem if you are wondering about a hot kettle, my kettle only dispenses  out a cup of water at a time so no lifting involved. It is all of these things that all be it small are great big strides for my daughter and they are all being taken at the same time. If it carries on I will be happy, even if it doesn’t I will be happy as I know she is able to do it if push comes to shove.

We also received a letter from CAMHS giving us another appointment about my youngest I’m not sure but I think that this is the one that we get the big report telling us what she can and can’t do. This report will tell us if she really is ASD or if it is our imagination that she struggles. Whatever the outcome she will still be my daughter and I will still love her to the moon and back.

Holidays!!!

Have you ever tried to find somewhere to go on holiday that caters for all of your needs as well as the children’s needs to? I am looking for somewhere just now, my youngest and I normally go down to Cornwall but we are unable to do that this year so I decided that we would go on a coaching holiday. I was looking for ideas when all of a sudden my plans have been taken over. I was hoping for a holiday that I didn’t have to drive or cook, I wasn’t asking for much or so I thought. The other half has different ideas, he is now looking for cottages for us all to go to and stay for a week. My relaxing holiday has now gone from a holiday with the youngest and I to a holiday for the whole family and me doing the cooking and driving. So I will drive there to wherever he picks take nearly a week to recover from the drive and then drive home. All the while doing the cooking and the washing and the driving whilst there. Then coming home and having a day to recover from that to doing the normal things like cooking driving and all the rest of it. I know I shouldn’t complain but I was looking forward to a wee holiday with the youngest before she starts High School. NOT going to happen now.

Anyway we have decided that we would like to go up north around the Highlands and Islands, not much for the youngest but for the rest of us it will be nice. I will just have to go looking for things for her to do and see. That’s not hard I hear you say, well for a ASD child it can be like looking for a needle in a haystack. It can’t be to noisy or have strong smells or have to many people. Then you have to think about me is it wheelchair accessible do they have things that we can all do as a family. Just thinking about it is exhausting.

We are a household that live on benefits it isn’t easy at all I have had to start buying school uniforms now so that when it comes to starting school after the summer holidays the girls have everything that they need. I know that we get a grant for them but £55 doesn’t go very far. so I have to get things when I can normally in the sale it is so much cheaper then. I hope that the girls will always have work no matter what so that they never have to choose between feeding the children or feeding themselves. We only go away due to the fact I save and my parents help us out. I have the car but I use my PIP money for that as I get the enhanced rate for mobility. If I didn’t have that I wouldn’t leave the house, I know what that feels like and I really don’t like it, I’m sure that if I was I would just get on with it but it is nice to get out and feel that I am a part of the world not just a person that people have forgotten.

I crochet for a pass time I only do baby shawls as then I’m not constantly starting something new all the time as I always have to finish one thing before going onto another. I don’t take orders as I don’t want to lose the enjoyment of it and I am not working to a deadline all the time. I will take some pictures one day of the ones I have done but not just yet I don’t think they are good enough. I am my own worse critic.

 

 

Month gone……

Already!!!!! Here we are at the end of another month, another month of pain another month of doing the same things day in and day out. I know I don’t do much with my life due to the fatigue and pain, but my days seem to blend together now. The only difference is the youngest needs different things each day of the week for school.

I was reading one of blogs that I follow this morning and I did wonder to myself how many people out there are the same as me. I am lucky that I have someone who cares for me and my girls, but they are growing fast the oldest will be 16 in February she will be going to University in another year, so she will be leaving the house. The youngest will be 12 in March she goes to high school in August, she will soon be independent from me. She has decided to go to Glasgow School of Art. This is one of the highest Art schools in the country and it takes a lot to get in. What ever the girls do I just hope that they have a good life and they get all that they need from life. You will notice that I said need and not wants, the reason is that I have taught the girls that if they have all of their needs met they will get some of their wants to along the way but they have to be worked for.

It is hard work bringing up children in this world, the age of computers have made them grow up to fast and what they see is so much different to what it was when I was wee. I know all parents say it but it is true in this case.

My diabetes at long last is starting to become under control, I really didn’t realise how bad things were until my sugars started to come down. It has been a long time since I have felt like this. I’m not saying that things are great but I am not drinking a well dry and running to the loo all the time. I am always tired so that hasn’t been any different. I know that once I get my toenails removed I will come off insulin and go onto another injection to suppress my appetite. To be truthful I don’t want to go back to the way I was feeling but I know that I will have to as they will not give me anything but the tablets that I am taking just now (they are not helping much).

The football season will soon be starting for me and I do look forward to that I am not talking about kick ball I am talking real football American Football. My other half is a quarterback coach with the Clyde Valley Blackhawks. I try to go to the games depending on how far from home they are as it they are to far I can’t go. I do enjoy it as I get football all year round as I get the NFL in our off-season and in the NFL off season I get uni ball and our own season. Win Win situation for me. I support Raiders and I have done for about 16 years now I love them to bits I just wish that I could go to America to watch them play it is a dream of mine.

I have a lot of dreams many of them will not come to life, but if I don’t have them I don’t think that I could go on. My main dream is that a cure is found for my Fibromyalgia if they find that I can have a life again go back to work enjoy life without pain without fatigue, I know many people are looking for cures for all ailments and I hope one day they will be found to, but I have to be selfish and wish for my one first. I know I should think of others before myself but on this subject I can’t, I wish I could.

Time to move forward and onto another month I wonder what that will bring I hope a little more sunshine in my life would be prefect.

American Football

I have been watching football (as we call it in our house), NOT to be confused with kick ball, I have been watching it for about 15 years now. I love it and would love to go to a game for real. I have helped to run a club but my health got in the way of it so it is no longer an option. I don’t know what I enjoy about it I suppose it is the hard hitting of it. I understand some of it but due to memory problems I forget things and have to have the other half remind me. He doesn’t mind, I hate it when the football season finishes cause I know that the other half is starting his season. To explain he is a coach for a local football club called the Clyde Valley Blackhawks, so soon he will be out every Sunday to training or even to a game. Some of the games I go to if I am able but it is a bit lonely in the house without him being there. I have my MECS so that if I fall someone will help me get back onto my feet. I don’t always feel very safe though.

The NFL are at the moment going through the play offs and the other half and I are betting between ourselves who is going to win each game so far we have been right. Our own teams aren’t through, Raiders got through to the first round but were knockout at that point, yes I’m the Raiders fan. As for the Mr’s team Ravens they didn’t get through at all. I think that they are going through a building period. I will be watching the Superbowl and looking forward to it to I may even have a drink to go along with it. Only if I haven’t had to many drugs for pain. I’m so glad that I have sky in my bedroom so I can watch it in bed.

Isn’t it funny what we have to do just to do something like go to an appointment stay in bed for the day before you go we have a CAMHS appointment for the youngest tomorrow and I am here in my PJ’s in my bed so that I can manage the appointment that is so wrong. My PJ’s are my favourite clothing as the are soft and don’t hurt as much.

 

Hospital

Going to the hospital today, I have had to spend the last three days in bed to make this appointment, what normal person has to do that just to get to an appointment! The reason for my visit is that my diabetes is out of control. The doctor has been trying to get it under control now for over a year, due to fibro I have found that I don’t tolerate a lot of the drugs that they prescribe for it. I was suppose to go onto an injection that is administered once a week to suppress my appetite, but once I talked to the nurse I am going onto insulin. There is only one reason for this is that I need to get my toenails removed. They give me so much pain that I decided that the best thing would be just to get rid of them. But they won’t do them until my sugar is within normal limits.

So the plan I believe is that I will be on insulin so that I can get my toenails done and then go back after I have healed to stop the insulin and start on the other one. I will be like a pin cushion by the time I have finished. The one thing I am looking forward to is that at the end of the day I may lose some weight. The injection that I will end up on will help me not eat as much. I know I am really over weight but I can exercise as it causes to much pain. So with a little bit of luck it may help me lose the pounds and become a slimmer me.

I feel that my wardrobe is a bit thin on the ground as I always seem to be in my pyjamas they don’t hurt as much to wear them but when I am dressed my body is in agony, I wish I could wear them all the time but it isn’t possible. When I know that I have to dress I think about all the things I have to wear to see what would be the best for that day. I always come back to my PJ’s. Once I come home I’m up the stairs to get into them.

New Year

Will anything be different this year I’m not sure I know that the last few years have been difficult, my condition has got worse I noticed through the festive season that I found it hard to get through it. I was so tired and in so much pain I just didn’t know what to do for the best. I am starting to feel like a burden to the family now I would like to feel well again go back to work but that isn’t going to happen that is just a dream. A dream that I have tried to give up but can’t. I will have to just push through as I always do, the time between is becoming shorter now and more parts of my body are just saying no time to stop. I feel sometimes that I just want to say ‘Stop the world I want to get off’.

I was driving this morning when I shouldn’t of been but I had to get the youngest to school and I had to pick up my drugs, never been so glad to get home and lock the car up as I didn’t have to drive again. I slept for a couple of hours this afternoon but now I could go back and sleep more. This isn’t a life this is just being here watching the world go by. Everything moving forward while I just sit here doing nothing watching my children grow up not being part of their lives just sitting here doing nothing but watching. It is a sad existence and one that I am going to have to come to terms with, life with fibro sucks. I could say worse but I won’t, with the pain and the fog, it is the fog that I hate the most you forget thing like that you have put the cooker on or that you have forgotten an appointment or go out in your slippers cause you forgot to change your shoes.

But with everything being said I can watch my girls grow in young women isn’t that a wonderful thing.

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