Hearing aids and Ways with Words

Hello everyone!

I am very busy at the moment, which is lovely. I’m going to start with something that has come as quite a shock. I have been having problems with my ears for a good few years now, and so got referred to an audiologist at a North West centre of excellence. I have been on sprays and god only knows how many other things, and if I am honest, I was expecting the specialist to just put me on another one and send me on my way. However, I had a hearing test which found that I need hearing aids. They think that my hearing loss has been caused by my ongoing nervous system disorders, and the only treatment that they can offer me is Hearing Aids. It is the first time that mum and I have sat in stunned silence after receiving a diagnosis. With my others they have been so expected because they have been so severe. Other diagnosis’ have been a relief, like we can build on that solid information, but this feels like a huge punch in the stomach; and is definite confirmation that no nerve is safe inside my body! I have noticed I can’t hear in groups, and that I have to have my television on louder than most, but it just hasn’t been a priority in the grand scheme of appointments. If you see me out and about I’m not sure if I am ready to talk about this yet (if you don’t want me to turn in to a crying mess that is), but give me a week or so and I will be back to my normal positive self.

 

This week I am blogging from the Words by the water festival in Keswick. They have very kindly given me a pass, so I am going to be learning a lot from the huge array of speakers. I will be blogging on the festival blog, so will share any links on social media. I was invited to the festival launch last night, which gives me a very positive feeling for the rest of the week. I came to the festival last year, and learned so much. Last year I could only attend the weekend events, but I am now in the fortunate position that I don’t have anything fixed Monday to Friday, so can stay all week.

 

If anyone reading this has gastrointestinal issues like myself, I would love to point you towards Hannah Witton’s channel. Hannah recently got a stoma bag due to her Ulcerative Colitis. Her positivity in the face of such a daunting life change has been really inspiring to me. When I say inspiring, I do not mean this in a ‘person who lives with a challenge is amazing because they live with a challenge’ way; I mean this in a ‘person has a life changing condition but starts a conversation around the issues’ way – because lets be honest –  If we had heart failure, or liver failure or if any other organ was failing we would feel no embarrassment in sharing the ins and outs, but because our conditions manifest themselves in the bowel it can be difficult. Hannah tackles the subject head on in her video called ‘I have ulcerative collitis’, with the thumbnail ‘lets talk about poo’! Hannah has helped to take the fear out of having a stoma bag for me. At some stage my condition will probably deteriorate to the extent that I need a colostomy or ileostomy, but seeing that while things have been difficult they have been manageable makes me less anxious about the future.

While I am shouting out YouTube channels, Jessica Kellgren-Fozard has taken the unknown element out of me needing hearing aids. I would thoroughly recommend her videos on disability and illness as they are so informative, and just generally friendly. She also makes videos on hairstyles which have been a life saver for me, as they are designed for the days when I have no energy.

 

So. Life has been a challenge…

Goodness me. 2018 has certainly been a challenge so far! I can’t believe its already February – and that I leave my teenage years behind and turn 20 tomorrow!

So I had tonsillitis, which wasn’t fun. I had gastroenteritis and a really bad flare of my neurological bowel problems as well. Then, my tube broke meaning I had to go to endoscopy to get it fixed. I luckily avoided a hospital admission because it happened on a Wednesday (It’s a Monday to Friday service!). Thanks to my subcutaneous fluids I could stay at home overnight, then go home again after the procedure. My tube snapping is classed as a medical emergency because I cannot tolerate anything orally; the only way I could describe my tube breaking is that it is like someone jumping up on you – at any time on any day of the year – and saying “right. From now until you go to a hospital one and a half hours away and have an operation you can’t have any food or water”. It’s scary.

I am also under investigation for a condition called cyclical Neutropenia – which is a condition whereby your white cells reach very low levels every 21 days. By ‘low’ I mean chemotherapy style low, so that’s why I have been picking up every bug under the sun – and refuse to meet up with anyone who is sick (sorry, to those I have cancelled at the last minute, it’s nothing personal). My small fibre neuropathy in my hands has continued to be painful, and my dislocations due to my Elher Danlos Syndrome seem to have been worse as well – explaining why I haven’t been blogging or doing my YouTube channel recently.

My medications have been making me feel very spaced out over the last couple of months. Nerve pain is a very tricky beast to tame, if you aren’t on it the pain is horrendous, like nothing I can describe – but when you’re on it you can feel quite detached and spaced out.

In better life news I am very pleased to say that I had two poems published in Acumen and Under the Radar magazine, which were very welcome mail!

In great life news I will be running an event this year at Litfest in Lancaster! I am going to be running a talk and Q and A session on starting a BookTube style channel and starting friendships online. I remember looking at this event last year, when I was thinking about starting a BookTube channel. Little did I know that the very next year I would be running it – and that my channel would have 2,000 subscribers! I still can’t believe I have reached such a huge milestone. Thank you to every single person who watches and reads my thoughts. Knowing people care about me and my opinions makes things so much easier to manage. You can book to come along on the LitFest website.

I will also be performing alongside two other Wayleave poets on the poetry day at Litfest. It would be lovely to see you there.

While on the thread of thoughts I should address that I haven’t been replying to letters this month. I am dictating this and everything I do is very difficult at the moment – but I promise I will reply soon. I feel really rude because quite a few of them are from before Christmas; but as you’ll gather from this post life has been pretty hectic coming in to 2018!

I’M GETTING PUBLISHED!

Hello! I’m back on here, finally! I have been having problems with my hands, which I’m not going to talk about because the last month has otherwise been lovely. The meds space me out, my hands are numb and sore – but that’s it. Meh. Moving on…

At some point in 2018 my first poetry pamphlet will be published by Wayleave Press. I am completely gobsmacked and thankful. I read the email five times consecutively. It has certainly been a good start to the year! I have so many people to thank for helping me realise this  dream. Thank you so much to the Wordsworth Trust for funding our young writers group – Dove Cottage Young poets – and to every single person that has worked with me on my poems. Just off of the top of my head (I will forget someone, but I blame my meds) Kim Moore, Clare Shaw, Brewery Poets, Mrs Holman and Miss S whom I showed my first ever poems to; every magazine that has both accepted and rejected my poems (I have had some very personal rejection letters, which have helped my confidence and spurred me on) – and to you, reading this and watching me on YouTube. People listening to what I have to say has meant that I have gained the confidence to aim for this.

So, moving on. How was your Christmas? Mine was the best one I have had since I have been poorly – which is massive. We started Christmas a day early, and my grandparents came over.  It was really lovely. We all just relaxed (avoided politics), and attempted to turn our brains off! I love my grandparents more than I can ever describe, they are the most selfless and lovely people you could ever meet. We sat and looked through some of the photo albums from when they got married way up to when my mum was in her early twenties. It was amazing to see how alike we all are, and the similarities that have been passed down.

On Christmas Day everyone came in to my room and we opened our stockings together. I made stockings for my parents this year so it was a real family affair. We used to go and sit on my parents’ bed, but my ‘little’ brother is now about six foot tall and mornings are the worst time for my blood pressure. I got the most gorgeous bobble hat, which I have barely taken off – in fact I wore it in my last video! Mum and I wanted to do the ‘posh’ thing and open our presents AFTER the meal… but the boys of the house got itchy feet – so we opened our presents once I was finally out of bed. I am a very lucky young lady. I got a Sizzix Big Shot machine, which cuts shapes out by only twisting a handle. The shapes are hugely intricate and gorgeous. I nearly cried the first time I used it, because I can’t really use scissors too well anymore. I finally have some crafty freedom back! We then went out for Christmas dinner. How lovely! We have never done it before, and never thought we would. However, over the last year my medical routine has grown to a sizeable portion of the day, so if mum had been cooking I would have barely seen her except for when doing medical stuff. Christmas dinner is a very special meal, and really is the only one that still upsets me. So, we went out to Toby Carvery, and I took some of my PO BOX letters and gifts to read. It was the best thing I have ever done. I sat and read these lovely letters – and some very gorgeous gifts. I didn’t feel sad or strange while they were eating – because at home there are so many memories attached to even the table setting – but while out I felt really content.

Now, in another break with tradition, we went out and did the Boxing Day sales. I know this is a rather controversial thing to do, but both my mum and dad have worked Christmas Day, Boxing Day and New Years Eve/ Day, many times due to working in the Emergency services.  Town was pretty busy, and I did manage to garb some bargains. However, people can be pretty rude when you are in a wheelchair and there is a bargain to be had – at one point a cashier was so rude to me  (after over charging me) I actually ended up saying “Just because I’m disabled doesn’t mean I can’t do maths!” He didn’t even look slightly embarrassed when I was right. He just saw the wheelchair and made assumptions. Very annoying! But things like that are a daily occurrence, and didn’t impact on the day much at all.

I just stayed in for New Years Eve. I learned last year that it’s pretty boring unless you are drunk! In fact, I was asleep at midnight. I don’t know what you expect to happen when midnight strikes, but it’s always a let down.

A happy new year from me! I’m very excited for this coming year. It’s going to be a good one, I can feel it.

Sensation loss, Lemn Sissay and Zebras

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.

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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 and sewing

#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!

I’ve been a bit sad.

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.

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

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

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

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.