I called ATOS this morning to try and get my PIP assessment appointment changed. I was sent a letter a few weeks ago telling me to attend an 8am appointment in a town 33 miles away! The man on the other end of the phone told me to call back in February to get a different appointment so that's what I did. As a result of my phonecall today I will mainly be slating ATOS so I think it's only fair that I balance it out and provide some positives. Here goes: my call was answered almost straight away. No going on hold and having to listen to that dreadful music. The chap I spoke to was polite, tried to be helpful and it was obviously a UK call centre so nothing was lost in translation.
But now the rage: they have NO appointments closer to home. They have NO other appointment to offer me. I am expected to attend an appointment at 8am despite the fact I have young children to get to school and I will still be hooked up to my feed. I would usually add in a few 'f bombs' or other choice vocabulary but I know that my parents don't like to read that and I received a telling off when they called the other day cause I had used the f word! (Sorry Dad 😔)
The lovely young man I spoke to today suggested that I bring the kids to the Assesment with me but that I would have to bring someone to supervise them whilst I'm in the actual assessment. So I should take them out of school (I can see the headteachers reaction now!) and subject them to a 70 mile round trip to the ATOS Assesment centre? Hands up who wants to come with me and look after them? Er, nobody. Just as I thought. Because that would mean you leaving your family at stupid o'clock on a Monday morning and would simply pass on the problem of getting kids looked after and to school.
Hubby is hopefully going to take time off work to accompany me but his work is...shall we say, difficult, as there's the threat of redundancy hanging over our heads at the moment. But I'm going to need his help because I will have to do this journey while I'm still connected to my feed so that means the rucksack coming with me. I will have to get up so early in order to get there on time and I really struggle with mornings which is something that was on my application form and obviously ignored.
I also struggle with being a passenger in the car on long journeys. And my definition of long is basically going anywhere further than the local shops. The other day I travelled to one of my local hospitals and when I got home I has to go to bed as I was exhausted. I slept for hours. Even just going out exhausts me- I slept for 20 hours after meeting a friend for coffee the other day. The fatigue I'm suffering at the moment is really bad. I don't think being anaemic is helping and the antibiotics that I'm on are making me feel pretty grotty aswell. Infact I'm going to ring the GP as my hands are swelling up and that's one of the side effects that indicate an allergy to the antibiotic. Nothing is ever simple with me it seems.
So I could spend the next 2 weeks getting myself all worked up about the Assesment or I could shove it to the back of mind and get on with life. It's half term at the moment so I'm pretty sure I won't get an opportunity to sit around feeling sorry for myself. The kids need a mum who is present physically and mentally. Actually they demand it. They expect it. So I have to paint on a smile, put on make up to look human and just get on with things. I find it so interesting the amount of times I get told I look really well just because I've put different clothes on and done my hair and makeup. I know people mean well but sometimes I just want to scream "I might look ok to you but I'm not!"
I need the layer of makeup to disguise the dark circles I have from never getting a full, proper nights sleep. It hides the fact that I look as bad as I feel. I'm still wearing Tena pads because I'm incontinent, I wear a fentanyl patch to control the pain and take so many tablets that I rattle. I wake up each morning and dread the day ahead as I know it will be filled with pain. I'm exhausted. So exhausted that I regularly fall asleep at the dinner table and doing the slightest social activity can wipe me out for days.
I'm not having a good time at the moment though. My pouch is inflamed and spasming and as a result I'm spending hours on the toilet. I can fall asleep while on the loo and once I got up in the night at 1.10am, went to toilet but when I came back to bed it was 3.50am!! I think once it's under control things will get better.
Fingers crossed
NB x
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