Finally, a lovely week :D

Finally, a lovely week :D

Hello! This week has been really lovely. There has been something I enjoyed every day!

On Thursday of last week I had my first session of acupuncture. I was referred for this by my palliative consultant. It can help people with nausea, and has a rising success rate. I don’t know if we were the only people that used these, but do you remember the bands that you put on your wrists as a kid if you had travel sickness? Well, if put on at the right spot they massage the same point that acupuncture hits, and actually work! I just thought it was the placebo effect – but apparently not!

I had the leavers awards ceremony at my old school on Friday of last week. It was so lovely to see the teachers who were integral to me finishing my A Level, and for keeping me sane with the odd belly laugh. I received an award called the Nan Fishwick Memorial Award, for my continued support throughout the years to the school library. Then, I received the Chandler award for endeavour and participation in the sixth form. It was a great feeling to realise that others recognised how damn hard I had worked to get that A Level!

Then, on Saturday I performed for a half hour slot at the Lakes Alive festival. I had quite a large audience and I felt the reading went really well. I did have to shout my poems, as the yert was open at the sides and it was raining VERY heavily; but it was certainly a good exercise in voice projection!

Yesterday, I went to Blackpool. I wanted to go to an art gallery there. The actual art gallery was a complete let down. It was so artistic that I didn’t really get it… However, trip adviser served me very well, and we ended up going to Illuminasia in Winter Gardens. I have put pictures of this below. Everything was huge and well above a person who was at standing height. I have put pictures below. Oh my goodness, it was WELL worth a visit. The sculptures are made of fabric and have lights on the inside. The overall effect was ten times better than anything I had expected. There were lots of rooms, and although the lifts were a bit scary and rickety, they did work and I got to see everything. My only grudge about the place was that you don’t get a free carers ticket, and so I had to pay for both of us. Mind you, entrance is only £5. If you live anywhere near please go, it is unlike anything I have ever seen before!

 

 

That is all for this week. I am beyond exhausted, but am very happy. As you can probably understand I haven’t done much reading this week (I have watched a lot of rubbish TV though….); but am listening to Cinder by Marissa Mayer. It is a reworking of the Cinderella story, so far it is a COMPLETE reworking, and you have to work a bit to find the comparisons.

As always, thank you for reading! See you next week!

Expectations vs. Reality

Expectations vs. Reality

Hello! I have had a jam packed week and am absolutely exhausted but happy. I was at the hospice for a bit this week. I had a great time! We made Mauam popcorn (my brothers review was “terrible” and my mums was”It’s going in the bin…”). I also made some rainbow cookies. Below is my expectation vs. reality… Apparently they were very hard and got better as they ‘matured’ (went soft…).

Expectation reality

 

I watched Beauty and the beast on the cinema screen they have in the teenage zone. I also went out in a huge minibus kitted out with things that could strap my wheelchair down. I went to a huge craft shop and had a little look around. We came back a little quicker than we anticipated though because I had a migraine. I am going to start marking them in my diary as I seem to be having them every sixish weeks. I hate them!

I have also done a few hours work experience at my old school alongside the librarians. Over the eight years that I have been at school they have been a constant, lovely presence. We have had our fair share of laughter, and I wanted to give them a hand to do a few jobs over the summer. Obviously they weren’t overly physical, but they were hopefully a couple of things that they could tick off of their huge lists!

Last night I went to see Hot Ice with my family in Blackpool. I am beyond wiped out and exhausted, but my goodness I am so happy we went! It is a very well organised and flamboyant dance show that is on ice. If you have never been it is sooo worth seeing. I think they are in their last week of performing for this year, but there are still tickets left – so book quickly! I wish you could take photographs, but you couldn’t. They did every style of dance you could think of. My favourite routine was this irish/ tap routine they did (on ice!!). The wheelchair access seats weren’t comfortable, but they gave a good view. My only quibble was that they do not offer a free carer ticket. This means that I would have to pay £30 x2 to go out with my carer – which is not going to happen. Most places have modernised enough to recognise that free or reduced carers tickets are essential – why haven’t they moved forward? I have the DVD of the show we saw last night due to my poor memory. I am going to watch it lots and try and make everything I saw stick, because it was incredible. I wore my sunglasses throughout due to light sensitivity, but it didn’t detract from the experience at all.

I also loved seeing my grandma so happy. We went out for a meal beforehand and I did what I normally do – sat knitting little prem baby hats on my loom!

My collapses have been quite difficult to manage this past week, but we have still managed to do quite a bit!

My phone broke this week. I got it for christmas and can’t afford a new one at the minute. I have sent it off for repair, and am hoping the quote to fix it isn’t too massive. It just stopped working! It is outside of warranty but I am hoping the company are reasonable. Meanwhile, I have been posted a phone by a very kind person, and I am very grateful.

I have posted a video on Monday of this week talking about all of the books I read whilst I had my infection. There is one really different one I read called Notes from a Coma. It is set in Ireland and I really enjoyed it.

Disability services I use and recommend

Disability services I use and recommend

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

Overall good things with a sprinkling of bad

Overall good things with a sprinkling of bad

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.

It’s all slotting into place…

It’s all slotting into place…

Hello!

It has been a week of results, meetings and mentoring.

We had a meeting with the Continuing Care team about some of my funding. It was a very difficult meeting, and it is the first time I have ever cried in a meeting. I won’t go into detail, but it was very a very difficult and sometimes harsh meeting. Sometimes I wish the people who are making decisions could live mine and my mums lives for a day and see how difficult it is. As mum is going to bed we always say “Love you, see you tomorrow to do it all again.” My long routine doesn’t differentiate, and sometimes it feels like groundhog day. Sometimes we are doing a procedure and I think ‘seriously? Its been 24 hours ALREADY?!’

In better news, and in case you haven’t heard yet, I managed to get an A in my A level which I am really happy about. Two years of sticking with it, and nearly one full year of teaching myself at home has resulted in this. I could not be happier!

The day after results day I had my first poetry mentoring session. I am having one a month for twelve months. My first session was so much fun, intense but extremely valuable. I know I am going to learn a lot this next year, and I am so over excited!

I also went to Dove Cottage young poets this week. We are running some events in the ‘Word Yert’ at the Lakes Alive festival (8th – 10th September 2017), so would love if any of you popped along.

I read Plum by Hollie McNish this week. She included poems she had written from the age of eight right through to adulthood. I loved it, and it got me thinking about when I first started writing. At the age of 7 my teacher sent a story home to my parents (plot summary: they died in a plane crash, the pilot and I were the only survivors, the pilot asked me to marry him but I had a broken heart and wanted to live on the road…. I was a deep 7 year old). My year 5 teacher wrote in my leavers book that she looked “forward to reading my first book!”. Being a writer has always been my dream. A dream I wouldn’t be following, it has to be noted, if illness hadn’t scared me into it. I could have gone my whole life not following my passion because it wasn’t sensible enough. How scary is that!?

 

Missing opportunities due to degenerative illness

Missing opportunities due to degenerative illness

As I type this I should be watching Sheridan Smith appear in Funny Girl in Manchester. Unfortunately, I am too poorly to travel at the minute and so have missed it. The biggest kick in the teeth regarding this whole thing is that I haven’t been given a refund on my ticket, as unless you buy insurance the ticket is non refundable. I’m really upset as I am on a very limited income and have to save hard for things. However, I would much rather be feeling rubbish at home right now, rather than possibly collapsing in Manchester and not getting to see the show at all.

I always knew the day would come when I was too ill to do something that I had pre-booked and had cost a lot of money. But you know what? There is no way I am going to stop saving up and buying tickets for these things, because they are amazing memories if I can go. Compromises happen on a daily basis for me – I have to rearrange friends or can’t stick to a commitment at the last minute. That’s the nature of my illness. I could deteriorate again at any time but I am never going to allow that to stop me from making plans. I’m going to make a video on this once I’m feeling a bit better, because it would be so easy to be very cautious about planning anything.

I’m on an extended course of antibiotics, and it is looking like my infection is receding (yay!). I am feeling a lot better than the last the last time I spoke/ typed to you. I still have a high temperature, but I am in next to no pain now – which is great!

I have listened to four audiobooks and read a physical book in the past week. I have made clay beads, knitted premature baby hats on my knitting loom and chatted to some amazing friends I have met through BookTube on Twitter.

That’s it from me. Sorry this is short – I’m trying to get back onto the Wednesday schedule 😀

See you next Wednesday xx

Saturday night fever (literally)

Saturday night fever (literally)

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!