Hello everyone! A bit of a different post this week. I thought I would post a list of services I have found really helpful that I wrote for a friend the other day, as she said they are really helpful. I have also made a video discussing these which you can find HERE.

Listening Books – A service for ANYONE with any form of disability. You definitely qualify. It is £20 a year and you can borrow up to 10 audiobooks a month. I listen to this when I am exhausted and can’t read. They have tonnes of new releases, its great!

CEA Card – You have to send in a copy of your PIP entitlement, a passport photo and pay £6. This means you get a free carer at the cinema and some theatres.

If you go in to your local library with a copy of your PIP entitlement you can order any book to come to your local branch for free (usually 60p a book) and also get no late fees.

The Trafford Centre – A long day out, with smooth flooring and access to every shop.

Preston – No tricky curbs on the main street as they have pedestrianised it. You can’t get to the poetry section in Waterstones though due to no lift. Grrrr…

If you ever book any events through ATG tickets tell them you are disabled. You have to bring proof of your disability to every event you attend (a CEA card is applicable). Mum and I got a pair of tickets to see a show in Manchester Palace theatre using this scheme for £19. Not each, that included both of us!

Radar Key – Bigger cities often run an accessible loo scheme, whereby you need a key to get in to the loo. This keeps them really clean. You can buy a radar key online for a couple of pounds on amazon. It’s a bit of a chunky thing, but I keep mine in my purse or bag and sometimes it is SUCH a god send!

 

I think I will do my normal life type post some time this week. Thanks for reading! X

Hello! I thought I would try and get back to a Wednesday for one final time. If I can’t do that this time then I will just upload one day a week when it suits me the best.
The last few days have been slightly rough in that there are arguments going on at board meetings that I cannot attend about my care. It deeply concerns me that as we speak there are boards comprised of medical AND non- medical people who are looking at my case and deciding what aspects to fund and not fund. Doctors along with all of their training struggle to understand my condition, so how is a non medical professional supposed to assess my needs? A little sneaking suspicion of mine is that they aren’t supposed to at all and they are put on boards to watch the costs. Maybe I have just been made syncial by these months and months of waiting for a decision.
I went and had a wonderful massage and manicure the other day. There is a young lady who comes to the Hospice that I go to in my own time and paints nails. She was SO lovely, so I told my mum and we decided to go as her birthday treat. I currently have very, very sparkly nails in shellac that I am hoping will last a while. The business is called Bellisima Beauty, for any of you living in the North West. She offers affordable and one to one service and is fab!
I had a very surreal and life affirming moment a few days ago. I follow Paper Swans poetry press on Facebook. I, along with a few other young poets were featured in their latest publication of ‘The young poets anthology’. Two of my poems were featured. Now, they posted a few days ago about what the Poetry Society Autumn review had to say about the anthology, and they used one quote from all of the poems in the anthology — mine! They quoted a line of my poetry. I sat in the car for a minute, silent and shocked, and then surprised my mum quite a lot by rambling on and on about it.
Mum and I are heading away for a night away. The ‘boys’ (my dad and brother) went awa wild camping for a night last weekend, so naturally mum and I thought it was our turn ! We have booked a Groupon and got a very cheap room. We are in need of getting away from it all quite a bit at the minute. The appointments are stacking up and we are getting a lot of stressful phone calls. We are so excited. The boys will be left looking after the house while we are away, which means the History channel (that never really has any history on it, usually just programmes like ‘swamp wars’) will be on loop.
My brother gets his GCSE results as this goes live! I don’t know how he has done yet as I am scheduling this post. Good luck to everyone today, but just remember that the results you get today are not the end of the road. As long as you can say you gave your all, who is any exam board to grade you? If you are feeling sad, make sure you take a step back and do some basic self care – like painting your nails, reading, lighting a scented candle. Give yourself some headspace before deciding what to do next.
I have been struggling a lot with pain in my wrists over the past few days. I have been wearing my splints and keeping topped up on painkillers. It’s all a part of my EDS 3, but worth mentioning. My fingers have been very painful as well, so I have been wearing my still relatively new Oval 8 splints an awful lot.

So I didn’t update my blog on Wednesday as I had planned. I have a really bad infection in my stomach around my feeding tube which is beyond painful. I am on very strong antibiotics though, so hopefully I will be sorted soon. It has completely taken it out of me – I don’t even have the energy to write poems!! I am really, really hoping to swerve having to go to hospital, but we will see.

I am feeling a lot better emotionally than I did in my last post. I have been taking time out to paint my nails and put hand lotion on. Very simple, but very effective in helping to raise mood.

Mum and I went to Manchester last week. We had an amazing time. Getting all the medical stuff I have to do in a day is very difficult in a hotel room, but we have decided to just do things as my condition is degenerative. We went to see Sister Act with Alexandra Burke in it. It was incredible. The stage was awash with the best harmonies ever. I haven’t watched the original film I now really want to. We also looked around the Trafford Centre and met up with our best joint friend who mum trained to be a nurse with 30 years ago! It was lovely.

Sorry this is very short, I feel a bit shocking so I’m going to leave it here. See you next week, hopefully feeling a bit better!