2019 goals and missions and my word for the year

So I'm not one for setting New Year's resolutions but there's some things that I would like to do more of and set myself to do next year:

• Do my nails and make-up more often plus dress-up more
• Keep up with my 'One Second Every Day' project (and remember to do it each day!)
• Continue working on and growing my blog
• Remember to put image descriptions on my blog and on my blog's social media accounts.
• Grow my YouTube channel and improve my video making skills
• Write reviews for Euan's Guide (online accessible places trip advisor)
• Make it my mission to improve the accessibility of red cords using the red cord cards I've ordered fro Euan's Guide
• Get into a better day and sleep routine
• Remember to take all of my tablets correctly and on time
• Get better at doing my physio exercises/stretches and 'Yoga for M.E.'
• Keep my bedroom tidy and tidy up after myself (even if it requires a nap/breaks)
• Keep up with my Warrior Beads project
• Get back into my Bravery Bottles project
• Look into going on a holiday with Revitalise (accessible holidays for people with disabilities)
• Make Instagram stories and create highlights to document my year
• Get better at sending out birthday cards
• Keep on top of my emails!

There's more I'll probability add and develop as the year goes on.

2018 was also the year of 'gratitude' I pic a word to try and live by each year. i've been thinking a lot about what my next word will be and lately I've been feeling stuck and low which my health and funding for various things going no happening so I think my word for 2019 might be 'hope'.

[Image description: the word 'hope' written in black handwritten writing]

December 2018 Birchbox

 

"Twinkle All The Way"
This month's Birchbox was filled with a few extra treats.

 LARITZY Cosmetics Long Lasting Liquid Lipstick in 'Tidal' which is a lovely dark rosy pink colour.

 





Percy & Reed 'Totally Hydrating TLC Mask'
A moisturising hair mask. I've received other Percy & Reed products from Birchbox and received good results so I'm popping this away to use in a little self-care paper session.

Oh K! Bubble Sheet Mask
"This innovative sheet mask reacts with the oxygen in the air to form tiny bubbles when you place it on your face. Not only does it result in a hilariously foamy face but it purifies and smooths skin for a radiant complexion"
This sound quite a fun product to use and I'm looking forward to trying it out.

Rituals - The Ritual of Ayurveda Body Cream
I LOVE Rituals products, they just smell amazing. I've tried theirs other product ranges but I've not used this product range before but I'm sure it will leave my skin smelling lovely.

Benefit 'Chachatint'
'Mango-tinted lip and cheek stain. I already have this product from another Birchbox and love the colour. A little goes a long way so it lasts ages.

Birchbox hair comb. Something I've been needing but not yet gotten round to buying so thanks Birchbox!






I'm really looking forward to seeing what next year's Birchbox's will include. 
My cosmetics/toiletries stash is already quite extensive already but it's nice to have a selection and save products to use and have a little self-care TLC pamper session.

YouTube Video: Aids and adaptations I use [CC]

Second video up on my YouTube channel. This one is about some of the aids and adaptations that I use.

I've not been sponsored by any of the companies that I've featured but I'll put links below to some of the gadgets I use if you're interested in purchasing them yourself.

• Tabtime Super 8
• Safe Sip
• VibraLite Mini watch
• Dycem jar and bottle opener
• Spill-Not jar and bottle holder
• Medic alert bracelet 
• Crutches: 'Switch Sticks'

Link to my YouTub channel can be found by clicking here.

International Day for People with Disabilities 2018

Today is the International Day for People with Disabilities.

I think so often when you have a disability you're faced with so many different barriers. 

I can't work, go to University, access certain places because it doesn't have the access I need like ramps or the aisles are to narrow, I can't get nearly parking or a space reserved for blue badge holders (and the misuse of these spaces). The list could go on. 

I'm also faced with personal barriers in terms of the unpredictable and relentless symptoms that I face each day as well as access to care and support. Today I found out that I can't access the specialist falls clinic because I'm too young; they only take referrals to people over the age of 65. It's like I'm being told I'm young to have falls yet today I've fallen twice and once yesterday. I've also been fighting for funding for a care package (carers) for years and the care agency I employ privately have openly said that if I was older my case would be dealt with differently and many people involved in my care from my care agency to community nurses all say I need more care. There are also barriers to specialist care; I'm currently waiting and asking to be referred to a specialist M.E. team but we don't have one locally; for a while I've wanted and feel I'd benefit from hydrotherapy but again this is not something our local hospital trust has (though hopefully when I attend UCLH's hypermobility team's exercise programme I can get some hydrotherapy sessions but it would require a 6hr drive to get there but I feel lucky to be under their care). I've also been waiting over a year now for specialist funding for a place in neuro rehab in Leeds and I'm in the middle of everyone passing the responsibility onto someone else to get the funding requested.

There are also the financial barriers to having a disability - See Scope's 'Extra costs: The financial penalty of disability'. Yes you get a disability allowance (PIP or Personal Independence Payments) but it doesn't stretch as far as you think. Out of that come things like extra food money because I have to buy specialist free from foods because of allergies and intolerances, I go through extra laundry costs because of my incontinence, I have the cost to pay carers and if I could afford it I'd pay for more care than what I'm currently getting because its not enough and often I have to choose between leaving the house or get a wash and that shouldn't be the case, there's also cost of adaptive equipment that the NHS or social care don't provide and clothing  and in winter the higher energy bills because you I need the heating on more because the cold makes my symptoms worse, or there's the cost of taxi's because I can't drive or use public transport. "On average disabled people face extra costs of £570 a month related to their impairment or condition".

There are social barriers. I'm mostly housebound so I don't get out much as I'd like to such as to be able to go to groups or see friends as often as I'd like. Letter writing is my way of connecting with the world outside. 

I think a large part of the barriers I face is the invisibleness of my disability/illnesses. When you see me in my wheelchair or with my crutches you can see the wheelchair or the crutches but you don't see what's going on underneath and you don't see the unpredictable nature of my disability. One minute I can be fine; the next I'm unconscious having a seizure or double bent pain. You don't see that I struggle with my cognitive function or washing my hair or the energy it takes to simply get dressed each day.

So what can be done to breakdown these barriers? Make buildings more accessible and for staff to be trained in supporting people with disbailties, produce information in alternative formats easier to obtain, support disabled people to access the care and support they need regardless of where they live or their age and less of the 'postcode lottery' when it comes to health and social care, for the public to be more aware of the barriers faced by people with disabilities, such as by not abusing disabled parking spaces and to see beyond the visibility of a person's disability/illness, for red cords in disable toilets not to be tied up (!) and for laws and legislations to be changed and made. (The list could go on!

Despite the many barriers I and many other people with disability face I will not let it stop me or define me. I must simply fight on. There is more to me than my disability.

New glasses

 

So these are my new specs that I though I'd show off to you. It took over an hour sat in Specsavers trying to find the right frames that a) I liked (I desperately wanted some Cath Kidston ones) and b) ones that would fit my think lenses due to my dodgy vision and thick prisms. 

I picked up my new glasses Wednesday and putting them on it was like seeing in HD. I'm still keeping my old glasses with the smaller prism for days when my vision is better. It's also nice to have more than one pair of tinted lenses now. I've found having the tint so helpful to my photosensitivity (light sensitivity); it just calms everything down and makes light tolerable to my M.E. and headaches (though you will still see me indoors wearing my sunglasses).

Due to my muscle and nerve weakness I have bad eyesight which has worsened since I became ill - I've permanently worn glasses since I was about 12. And a symptom of FND is double vision which I have quite badly. I also have Scotopic Sensitivity Syndrome also known as Irlens so I also have a pair of purple tinted lenses for reading.

On my computer and phone thanks to assistive technology I also have tinted screens and reduced white point which makes life a lot easier.

I might do a post on Scotopic Sensitivity. So many post ideas - you should see al my draft posts I have on the go!

November 2018 Birchbox

This month's Birchbox's theme was based on Disney's 'The Nutcracker and the Four Relms'.

Inside was...

• A Spacemasks self-heating eye mask which is infused with jasmine. It was very relaxing and the heat really helped and its something I have already added into my shopping bag to buy and they would also make great gifts.(Full size - RRP £3.50)
• A Manna Kadar cosmetics Dimond just Roller Eyeshadow in shade Pixie. Its really easy to apply, it can either go on as a solid colour which is like a super glittery pale pink or it can be blended with a brush to add shimmer over your eyeshadow. It can also be used as a highlighter or to add glitter to your lips. A little goes a long way so I can see this lasting quite a while. (Full size - RRP £15) 
• A Paul & Joe foundation primer. I've not tried this out yet. (sample size)
• A Polaar night cream, again not something I've used yet. (sample size)
• A Beauty BLVD Hydra-Gel eye masks - two supplied. I've not used these yet either but I'm looking forward to trying them out. (full size - RRP £8.50)

 

Temporomandibular Joint Disorder

Temporomandibular Joint Disorder (TMJD or TMD) is a condition that affects the muscles and joints of the jaw.

Symptoms include:

• A clicking and grinding noise 
• Pain around the jaw joint and muscles
• Ear pain that can spread to the temple and cheek
• Stiffiness and difficulty opening the mouth
• Headaches/migraines
• Neck pain 
• Lax subluxations or dislocations

There are a number of causes which include:

• Clenching or grinding the jaw - most people do this in their sleep or when stressed
• Injury
• A uneven bit
• Or other medical conditions, in my case Hypermobilty Spectrum Disorder 

There are a number of treatments such as exercises and wearing a brace, both of which I do. Lifestyle changes can also help such as avoiding certain foods or cutting certain foods up into smaller pieces, relations techniques such as applying heat, pain relief medication. 

October is Dysautonomia Awareness Month.

October is Dysautonomia Awareness Month.

So what is dysautonomia?

Dysautonomia refers to a disorder in or with the autonomic nervous system. This is responsible for things like heart rate, blood pressure, digestion, kidney function, temperature control and more, basically all the bodily functions that occur without having to consciously things about it and it affects every part of the body.

"People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, and abnormal heart rates. 

Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time but there is research bing done."

- Dysautonomia International, 'What is Dysautonomia?' 

There are several illnesses that are caused by dysautonomia. I don't have any particular dysautonomia disorder but I am affected by dysautonomia due to my M.E. and HSD. I have a low blood pressure and faulty heart rate which leads to dizziness, light headedness and fainting. I also struggle with temperature control, especially feeling cold all the time and finding it difficult to warm up and my digestive system is slowed down too. 

Although there is no cure there are things that can be done to help manage my dysautonomia I take electrolyte supplements, and I've had to get over my dislike of salt and increase my salt intake and eat smaller meals. The idea behind smaller meals is that the you have a big meal all the blood goes to the digestive system leaving less blood for the rest of the body causing symptoms like dizziness and light headedness. Changing my posture too like when I lie down can also help.

October is Dyslexia Awareness Month

So October is Dyslexia Awareness Month. I've had dyslexia all my life, but it took a long time for it to be picked up and diagnosed. I have a very vivid memory of being 4/5years old and struggling with my reading homework which including the word 'what' and I was insistent that the word was pronounced 'w-hat' and my Dad was desperately trying to get me to say 'what'. 

Dyslexia is a form of 'Specific Learning Difficulty' (very different to a 'Learning Disability')

Having dyslexia doesn't mean I'm not intelligent - my brain just works a bit differently and gets a bit more scattered than other people's and I think more in pictures rather than words.

Dyslexia runs in our family - both myself, my brother and my Dad have it.

I always struggled with reading and spelling. I hated being called out to read aloud in class as people would laugh at my reading aloud ability or dis-ability in my case. What I found most frustrating was I was so bright, when it came to writing our work out my head would be buzzing with ideas of what I wanted to say but putting pen to paper was slow and very difficult and I was always pulled up for not finishing my work or for my spelling errors. Despite my intelligence I was in the bottom set for work so some of the other students that where on my table preferred to pick on me rather than do their work so I didn't;t really enjoy school that much.

Finally when my dyslexia was picked up, assessed and diagnosed is was almost like a sigh of relief. I quite beating myself up and my IQ was higher than average but for things like reading and writing speak I scored so low it wasn't on the chart but other things I scored very highly on so I was able to work with my strengths. I also got introduced to assistive technology which has been a lifeline and I got a support worker in class as well as 1:1 teaching sessions to help me with the things I found difficult. I also got special arrangements for examinations.

Some of the assistive technology I use is Dragon which a voice controlled, so I can control my computer with my voice and i can talk and it will type for me. Read and Write Gold which has lots of different features like reading out text, having a more advanced spell checker, a word dictionary, screen overlay, high lighter organiser and many more. I also use Inspiration in which you can mind map out things such as essays, blog posts etc.

Looking back I think I would have done better at education if my dyslexia hod of been picked up sooner but I pleased with myself for how far I did get without the support and knowledge of my dyslexia.

So, what is Dyslexia?

• Dyslexia is one of a family of Specific Learning Difficulties.

• Many people who have dyslexia have strong visual, creative and problem solving skills.

• Dyslexia is not linked to intelligence but can make learning difficult.

• Dyslexia is a life-long condition which has a substantial effect on an individual’s day to day activities and is classed as a disability under the Equality Act 2010.

• Dyslexia varies from person to person and no two people will have the same set of strengths and weaknesses.

• It often co-occurs with related conditions, such as dyspraxia, dyscalculia and attention deficit disorder.

• Dyslexic individuals often have difficulty processing and remembering information.

- The Dyslexia Association

 Alongside the dyslexia I also have Scotopic Sensitivity, or Irlens. Some people have this alongside their dyslexia, other can have it without having dyslexia. This was picked up a long time before my dyslexia.

Wearing tinted lenses - originally it was green, then blue and now purple they help to 'unscramble' the words on a page and makes it easier to focus on the text. I also have a colour filer on my laptop, iPad and phone which does the same thing.

"Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a perceptual processing disorder. It is not an optical problem. It is a problem with the brain’s ability to process visual information."

- Irlen 

September is Pain Awareness Month 2018

So I thought I do a post on pain as September is Pain Awareness Month. Unfortunately chronic pain is a key symptom of all of my main illnesses. Whether it be headaches/migraines, muscle spasms, joint pain, musculoskeletal, stomach/abdominal or neuropathic pain.

Pain can either be widespread meaning is is in multiple parts of your body or all over body pain. Or there is regional pain which is pain in a specific area such as your right shoulder which is because I've just dislocated it.

Acute pain is sudden pain and doesn't hang around for long, where as chronic pain is longer lasting and may lasts days, weeks or even months.

For me I had a baseline level of pain which is my usual level of pain that I live with daily that is managed by daily medication and PRN (as and when needed) pain relief medication which I use as 'breakthrough' pain relief when the pain flares where my baseline pain flares up and becomes more severe. The PRN medication can range from paracetamol to morphine depending on how much and how bad the pain is. I also use alternatives too such as my TENS machine and heat. I also use exercises such as the ones given to me by my physiotherapist, or just doing some yoga stretches; I also use splints and braces; pacing myself is also a really good tool and I also use mobility aids like my wheelchair or my crutches.

I prefer personally to use the term 'pain relief' as often it never full takes that pain away. It just reduces the level of pain I'm in so I can get on with my life as much as possible.

Pain is very tricky to control as it's very unpredictable and is very difficult to live with.

I struggle with lots of different types of pain which can be tricky and sometimes unbearable at times.

Musculoskeletal pain affects the muscles, ligaments and tendons, and bones. My back, especially my lower back where I have my hyperlordosis (inner curvature of the lower spine) and also from my muscle spasms. 

Neuropathic Pain is caused by damage or problems with the nervous system. It can result in a number of different sensations from burning, to numbness to a pins-and-needles sensation.

Joint pain is attributed mostly to my hypermobility with my joints being lax so they easily sublux or even dislocate; because my joints are 'loose' it can cause discomfort and pain.

Muscle pain can range from aches to muscle fatigue to tenderness and more. Most of my muscle pain comes from having M.E. but also from having tonic-clonic seizures.

Abdominal/Stomach Pain which is mostly due to my IBS but also because my digestive system is stretcher due to having faulty collagen because of my HSD.

Headaches and Migraines I live with Chronic Daily Headaches, I've gotten so used to having them that they're just "there". Sometimes the headaches brew into a migraine, for me its either a Migraine with an Aura or in the extreme a Hemiplegic Migraine, but thankfully I'm not on medication and since them I haven't had any major migraine attacks.

"Many people with HSD will experience frequent acute injuries such as sprains, strains, subluxations and dislocations. These injuries can cause short-term pain but many people with HSDs also have chronic pain." - JB Occupational Therapy

"Pain that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (where it has a burning or searing quality and may be associated with paresthesia and other sensory disturbances)." - M.E. Association

"Chronic pain occurs when signals of pain remain active in the nervous system for weeks, months, or even years. This can take both a physical and emotional toll on a person. This type of pain does not always respond to medication." - FND Hope

Living with chronic pain isn't easy, you get so used to being in pain that you forget what it feels like to be pain free.

I embrace the good days when my pain is minimal and I can get on with my day, but in an instant that can change. My abdominal pain my suddenly flare up, or I my dislocate my shoulder. And I dread the bad pain time, when I'm in such unbearable pain I can't do anything and I am restless because I can't get comfortable and I'm exhausting all my resources to ease the pain just that tiny fraction. 

Even sensory information can be painful, this is partly due to my M.E. and partly to do with my headaches/migraines; I wear tinted lenses as I'm very light sensitive and I have a pair of ear defenders for when noise can be painful. Sometimes when I'm quite unwell even touch, like the weight of my body on the bed or the weight of a blanket on top of me and movement can be painful.

Living with chronic pain is hard to sum up and it is much more widespread than the pain itself, you get the side effects from the medication you take to manage your pain, pain can leave you tired and brain fogged, it affects my sleep and mood. It can also be very isolating, especially when people around you don't understand your chronic pain, especially as it can't be seen.

I've come to learn to live with chronic pain and embrace the good days and endure he bad days.

August Birchbox Review

This month's Birchbox was designed by Etsy seller Nikki Strange. This month's birch box design came as a unique design and there was a chance of receiving 1 of 10 designs made by Etsy sellers and the theme was "Live a life beautiful".

Inside I received...

Eye Shadow Crayon in 'Fetch' by Dirty Little Secrets
This product I got to choose the shade and I've tried this product out and I love it! The shade is beautiful subtle; it's very neutral with a little shimmer. It's very easy to put on as not brushes are needed and it has a lovely creamy texture. Just scribble a bit onto your eyelids and blend in with you finger and off you go! It can also work as a base coat of powder eye shadows and it can also be used as a highlighter so two-in-one - fantastic! And it's lasts all day but it easy to take off at the end of the day. I got this as a full size product and it's a decent size and a little goes a long way so it's going to keep me going for a while. The RRP of this product is £10.50.

CLĒ Cosmetics Melting Lip Powder in Red Cherry
This little sample, tough it may a sample a little goes a long way. It can be used as either a lip colour or a cheek tint and goes on as a lovely matte finish and as a bonus it's smudge proof so is long lasting throughout the day. The RRP of the full size product is £15

Dr Botanicals Pomegranate Regenerating Sleeping Mask
This product I have tried out. Just cleans your face before bed and apply a small out and work into your skin and you wake up with lovely refreshed skin. It smalls amazing too. "The antioxidants [in this product] will rejuvenate tired skin so when you'll wake to a glow, hydrated complexion". The RRP of this product is £14.90

ModelCo®  Eye Define Crayon Liner
This was another full size product which I haven't used yet as I'm wanting to use up my current eye crayon. It's a twist-up crayon, so no need for sharpeners (yay!)  and lasts all day, perfect! The RRP of this product is £11

Bumble and bumble. Don't Blow It Hair Styler
This was a sample size and not one I've used yet but I love Bumble and bumble's other products from previous purchase's and Birchbox's but I'm eager to try it out as I often don't blow dry it's designed for towel-dried hair which isn't going to be blow dried as I often don't bother to blow dry my hair. The product uses "plant based conditioners to enhance you hair's natural texture and shine". The RRP of the full size product is £24.

All products can be bought in full size from the Birchbox Shop and if you wish to subscribe to Birchbox follow this link https://www.birchbox.co.uk/invite/pm6lh to earn £5 to spend in the Birchbox shop and each month new subscribers also receive a free gift. Birchbox costs £12.95 each month including P&P and there are different subscribing options and you can cancel anytime.

Between a Rock and a Hard Place

In the year I've been at group therapy (and I still have enough 11 month to go) my symptoms, especially my various types of pain and especially my fatigue have gotten worse because I have to put it aside to go to group even when when my body is screaming at me to stay home/in bed and rest and the staff there I feel don't understand or what to listen to my physical health stuff; they want me to leave it at the door and focus on my mental health (despite my physical health having a great impact on my mental health) and they blame my fatigue on my medication which is keeping me afloat and I'm saying over and over again "it's not my my meds, it's my M.E." [that's making me so tired] but they don't want to listen and I'm left feeling voiceless and wishing I wasn't physically sick. 

Yesterday I called up my contact for the Complex Care Team, she's just the admin but was very understanding when I explained my predicament with the group therapy staff not understanding or listening to me about my physical health and them wanting to reduce my medication (even though they're not Drs). Hopefully soon I'll be assigned a key worker in in team so I can have someone to talk to and help me unmuddle things (and have a big MDT (Multi Disciplinary Team) meeting with my care co-ordinator from the group therapy to explain and discuss my needs, physical and emotional) as I'm just declining and at the moment I'm wondering if I can continue with group therapy but if I do I will lose all access to mental health care and I can't do that so I'm in a rock and a hard place and my body is failing me.

Before I started the group therapy programme I was able to pace myself throughout the day. On my bad days I was able to stay in bed and rest and do what I can and I was able to spread my energy out thought out the day and get up when my body was ready and take rest/nap breaks when needed and do what needed to be done when I had full capability. Now jobs get left - my bedroom is a mess as I don't have the energy because my days off from group therapy are spent resting because I'm so drained and when I get home I just crash for the rest of the evening until I drag myself to bed because I'm forced to get up earlier than my body likes and leave the house and sit through groups and fight the fatigue and get moaned at because I'm nodding/switched off and my medication is being blamed when there should be more understanding of my M.E. and FND.

The group therapy staff are also putting stoppers in the way to me getting to rehab in Leeds which really angered me when they brought it up in my last CPA (Care Plan Assessment) and they want to speak with Professor Edwards (when I don't know what they're saying to him) about my mental health and how that might make my ineligible for the rehab in Leeds at this present time as they don't think I should be going because of the state of my mental health even though like I've said a big chunk of that is caused by my physical health, which just sucked away all my hope of getting some help for my FND and M.E. because I've been waiting for this rehab ever since I first saw Professor Edwards last year. I think I need to find out and request that I be kept in the loop with all conversations with Professor Edwards and the Leeds rehab centre to ensure the correct information is getting passed on?

I just really don't know what to do. I might have to take some timeout of group therapy if this hypermobility sessions come up so that might give me a welcome break to at least try and look after my body in-between travelling to UCLH.

I think when I go to group therapy later on today (it's currently 5.40am and I can't sleep) I'm going to have a conversation with my care co-ordinator about everything. For now, I need to try and get some sleep.

Hypermobilty Eduction Session - 7th August 2018

So yesterday's appointment was a bit different.

Patient Trnaspost arrived to pick me and Dad up. We took a pit stop at Peterborough Services and I had my obligatory Costa along with their mini gluten.dairy free cherry bakewells.

We got there a little late as the crew member diving couldn't find the hospital and I was madly trying to get in touch with literally anyone at UCLH to say we was coming and one our way as the appointment letter said if you arrive late you may be turned away and I desperately didn't want that to happen and have a wasted trip, plus I'd made sure that the appointment was during the summer holidays so Dad could come with me (he's a teacher). 

So once we got to UCLH it was a made run, (well, Dad running pushing me in my wheelchair) from the main UCLH building to the Education Centre. We was a little late but we got in most of the session and the physio who took the session is going to email me the power point.

The session covered things like what is hypermobility, pain, symbols and management of symptoms, nutrition and abdominal symptoms, autonomic issues/symptoms and tips for management, posture and footwear (so no more ballet pumps for me!). It also covered the two treatment pathways following the session which is the COPE Pain Management Programme and the Hypermobility Exercise Programme.

We (Dad and I) had a good chat with the physio afterwards, asking things like what of the two treatment options I should do first (I went for the pain management programme first and then to to the excise programme after so hopefully when I do the exercise programme my pain would get in the way so much). I was also anxious about how the exercise programme would affect me M.E and the physio had some knowledge of M.E. and so reassured me that they would work within my capabilities and not push me to breaking point and would build me up slowly at a pace I can tolerate both in terms of my hypermobility and with my other illnesses.

When the physio covered the slides on autonomic issues - things like heart rate, temperature, dizziness - all pre-seizure symptoms so I'm going to trial some of the advice for managing autonomic symptoms like increasing my salt intake (easier said than done as I really don't like salty food), drink more and have smaller meals as the amount of times I have seizures after meals is rediculous but apparently having smaller meals reduces autonomic symptoms as all the blood isn't rushing to to the digestive system.

So all-in-all it was a very productive and valuable day. The physio wasn't sure how long the wait was for the COPE Pain Management Programme but hopefully it won't be too long and then when I've done that I can be referred for the exercise programme.

I left feeling so lucky to be under UCLH now for my hypermobility after so many years of locally hitting brick walls and no one really listening to me or doing anything to help and support me. I have an amazing team of different specialisties that all specialise in hypermobility related complications and other co-mobidities.

Before heading back to the ambulance we took a quick toilet break then whizzed over to the main UCLH building to grab a coffee and a snack and then we set off home.

I had a few seizures on the way back home, probably because I was so tired but travelling via stretcher now for my London trips is defiantly the way forward and I had a nap and I'm loving my new beats headphones as listening to music/audiobooks defiantly help pass the time on long journeys. 

UCLH Gastroenterology Appointment - 4th August 2018

So on Saturday I had another trek down to UCLH in London for a Gastroentrolgy appointment, one that came from my appointment with Dr Kazkaz (rheumatologist).

As the appointment was at 3.45pm I didn't need to be up mega early. Patient transport picked me up just after 11am.

The journey there was pretty uneventful and we had a pit stop at Peterborough Services, the only hiccup was the struggle to find the hospital - we could see it over the road but didn't know how to get over to it and the it was a case of finding where ambulances could park and then it was a case of finding the right building and clinic, but with a but of guess work we finally got there.

TW: Picture of needles

The Doctor I saw was very knowledgeable and reassuring and he's put a plan in place for me to start on a new medication (which I can't remember the name of and I can't read his handwriting!) and another treatment called bio feedback which I forgot to ask what that was, so I'll have to do a bit of googling. He also gave a name to what's going on but again I can't remember the name of it so for that I'll have to wait for the summary letter which should hopefully have it on. He also looked up hospitals closer to home that he knew specialised in hypermobility/neurological related GI issues should in the future things progress and I need more intensive care to save me travelling down to London a lot. He ordered a bunch of blood tests which I has after I saw him and I'm having a follow-up appointment in 6 months time.

On the way home I had a couple of seizures and again we stopped of at Peterborough Services. My new headphones came in perfectly for the journey there and back and I just sat and chilled listening to my iPod which help distract me from the nausea.

I got home around 9pm and got something to eat and drink and watched an episode of something on Netflix then headed to bed.