First of all I’m going to start with the crap medical stuff. My symptoms have suddenly taken quite a dip. I am losing sensation in my right hand and some fingers in my left hand. This seems to confirm my neurological diagnosis, and the fact that it is degenerative. Even despite this, I am feeling so much better than the last time I wrote. I know it is sad, but I’m nowhere near as upset as my last post. This is because I opened a PO Box and I have been really enjoying receiving the first few letters. I’m going to reply to them today. I feel so much less alone. My symptoms have been getting worse over the last 6 weeks, but I just assumed I was having an EDS dislocation flare. I am getting stiff in the night, unable to move without strong meds, and now the sensation loss. I am in the very fortunate position that I have the two best doctors I could dream of, who are going to try and talk on Monday. One is local, and one works in a large city hospital. I’m finding writing with a pen difficult, and am trying to teach myself how to do it with no sensation. Then, my arm aches so I am struggling to do most things. I am using dictation software right now, so I’m sorry for any grammar mistakes. I have invested in a book rest, meaning I can still read easily – there is no way I’m giving that up!
My new PO BOX address is:
LETTERS TO HANNAH
PO BOX 147
CARNFORTH
LA5 5BF
It would mean the world if you had the time to write a letter. I can look at them when I am feeling down, and hope to create a pen pan style relationship with a whole host of people. (It would also be helpful if you could include an international reply coupon or UK stamp if you live here).

Over the past week I have been a bit radical by Hannah standards 😂. I have got my seconds ear piecing done, and have dyed my hair dark purple. These are things I have wanted to do for a long time, and there is no better time to do such things than when you feel a bit rubbish.

Last wednesday I went to see Lemn Sissay live at the Brewery arts centre. What an amazing guy, he pinned you to your seat, looked right at you. He had the room crying with laughter one minute, and actually crying the next. His play, ‘something dark’, proves both his strength of character and linguistic skill all in one. I was absolutely exhausted and so couldn’t stay for the Q&A, but still, all this time later think about that play a lot.

I also went out fabric shopping last week. I went to a shop that only stock one roll of a fabric and then never stock it again. It is called Colours of the Rainbow and is based in Carlisle. I went in and bought three metres of ZEBRA fabric. Why am I so excited by this? Well, people with Elhers Danlos Syndrome (EDS), are called Zebras because while every zebra is recognisable as a zebra, every zebra has a different amount of / pattern of stripes — no two are alike. This is the same for us, while we all have EDS, no one has exactly the same experiences/ symptoms.

I did a poetry reading with Lancaster Spotlight in a care home last week. It was such a wonderful experience. I think the residents enjoyed our music/ poetry/ spoken word, and it gave me so much to be thankful for. I chatted about the colour of mobility aids with one of the residents, it was quite amusing!

Anyway, thank you once again for reading what’s going on with me. It’s difficult, but it’s so much easier now that I am happy and raring to go!!

#MeToo when I was in year 8 the textiles room had art stools with the holes in the seat so that you can carry them. A boy thought it would be funny to put a pen up my skirt through this gap, and ram the pen right in to my private area. I cried and cried when I got home that night, it hurt like hell, but put it down to boys being boys. I didn’t tell anyone because I thought they wouldn’t take me seriously. I only realised about 6 years later once I had read Everyday Sexism, that it was completely wrong. How are we conditioned in to believing things like this are okay?

I have a better week this week. I’m not as sad, I’m just upset at my body I think. I am learning to sew using a second hand sewing machine. I am making all sorts! I just need someone to cut out the pattern and help me pin – and away I go! Dislocating fingers can’t stop me! I thought my troublesome forefinger and middle finger were on the mend, but they have swollen up pretty huge so they are in splints now.

I have been doing lots of poetry admin – which is difficult when you’re down, so I’m glad to be feeling a bit better and getting back on with things.

I went to the Lakes International Comic arts festival this past weekend. I got given a few review copies, spent more money than I should have, and met lots of people who I have been emailing. There were so many accepting people in town. I didn’t get stared at, I got smiled at. People noticed I was a person! That is quite a rare thing for Kendal, I usually get never ending stares and scowls.

My exciting announcement is being pushed back to Monday, so look forward to that!

Hello all! I am back from my longest ever break from my blog. I decided to take a step away after I started to feel like things were getting on top of me. I have so much routine to my day, more than I will ever speak about, and we have been challenging so many different people to try and make decisions in my best interest – I just became a bit tired of everything I guess, and a little emotional.

Talking about the nicer things that have happened this month, I have bought a second hand sewing machine and am learning to sew. I am trying to develop some affordable pretty medical items. If you can think of any items that would be beneficial to you or anyone you know, let me know!

I performed at Borderlines festival, Lakes Alive, Spotlight and the in the Grasmere In-the-Round Theatre. It has been a full on month putting my body through the nights out, but goodness me it is so worth it. I love performing and writing poetry. It saves me in so many ways.

I have had a sizeable number of appointments, both near my home and a fair trek away. It is so worth it when the people you trust, and are personable. People are really trying to understand my condition and make it more comfortable for me. I have seen: The specialist dental service, the palliative care doctor, the palliative care nurse, the hospice near me’s physio, the urologist, the neurologist and my gastroenterologist, wheelchair assessment, District Nurses and the hospice for some lovely respite. I am not saying all of these for sympathy or anything like that. I’m just trying to say that on top of my daily grind I have appointments and other things that I must do in order to stay as well as possible. Some people think that my mum has quite an easy life looking after me, but it is all of the jobs that people don’t think about relating to serious illness. Ordering and drawing up medication, GP appointments, not being able to shower alone, needing help to get up and dressed.

I am going to be announcing a HUGE project over on my YouTube channel next week. I have applied for funding and it has come through. It is going to be amazing.

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…).

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.

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.