The emotional toll of being chronically ill

The emotional toll of being chronically ill is HUGE. Most of the time you have to hold it all together and put on an mask and smile because life has to go on because there is no magic cure but then you get moments where you just crumble and you find yourself wrapped in wet towel crying because the burden of holding it all together became too much.

That was me tonight. Just the thought of getting dressed too tiring let alone the thought of getting through tomorrow. Knowing you will have unrefreshed sleep because I can never get comfortable and another day of relentless pain, debilitating fatigue and the unknown and unpredictability of what symptoms I will have, or how many falls or seizures I will have.

The unpredictability brings a lot of anxiety and a few weeks ago I had a really bad seizure a church resulting in paramedics being called and that's taken a huge knock to my confidence, especially leaving the house.

Simple things can can set me off sometimes, like tonight. I can find myself getting angry or frustrated or upset over spilling coffee granules because of my tremor or myoclonic seizures, or people not understanding me when my speech is slurred or stuttering, or my continence pad leaking and having to change my clothes or bedding at 4am. But in that moment those small things become big things.

It's like chronic illness is a cup and every minute of pain, or being too tired to move, or spilling a drink etc is a drop of water into that cup and it gets to a point where that cup overflows and you breakdown because you can't contain it anymore.

For me I see my specialists in London every 6 or so months but in-between then I get little medical support so I feel like I see them and then I'm left on my own. Everyone seems so wrapped up in my physical health that the emotional toll of my health gets forgotten about. I'm under mental health services for my mental health but they're so clueless about  my physical health that they're not much help either. 

It's not just the medical burden of symptoms but the day-to-day activities that become an emotional burden because of how difficult they are to do. Things that able-bodied people take for granted and don't think twice about being able to do like getting dressed, or having a wash, or getting up to make a cup of coffee.

I think the emotional aspect of being chronically ill is the most invisible and sometimes the worst aspect. 

As well as having to deal with the illnesses themselves comes all the admin which is also emotionally draining. The phones calls and emailing which is exhausting especially when you get bad news and so you have so sort that out or there's a meeting so you need to invite this person and that person and you have little help in doing that.

It really is hard to sum up, especially to able-bodied people how emotionally overwhelming being chronically ill is and I find myself typing here over the past few days putting this post together getting frustrated trying to find the right words to get across what it is I want to say in explaining the emotional toll of being chronically ill.

You become sick and tired of being sick and tired. And there's no let up; no days off; no hours or even minutes where I'm symptom free. Being ill and disabled is my full time job and it's a job I didn't choose and one I can't resign from.

I'm not quite sure how to end this post but it was a place to vent and explain that there's a whole emotional side to being chronically ill that people with chronic illness and disabilities have to live with. And for those whose illness or disability came later in life there is also the loss of the life we had before.

My advice to able-bodied people is if you have a friend with a chronic illness/disability is just simply be a friend and listen to them - a chat over a cuppa can go a long way. Or ask if there's anything you can do to help. But also remember that there is more to a person than just their illness and it can be nice to talk about other things too which gives us a nice distraction from the illness that we're having to deal with on the inside. 

Guest post by Hannah for World Poetry Day 2019

I have a number of diagnosis’, and in June of 2016 I was finally diagnosed with EDS (Ehlers-Danlos Syndrome) type three (now hypermobile EDS). EDS, along with another neurological condition, has wreaked havoc in my body. In January of 2015 I began to no longer tolerate food or water – and so now have a feeding tube directly in to my bowel. I have gastroparesis – but tests show that not only is my stomach paralysed, but my whole gastrointestinal system. I also have PoTS (Postural Orthostatic Tachycardia Syndrome), neurological deafness resulting in use of hearing aids, and many other conditions. 

In January 2015, I was in my dream position in life. I had passed all of my GCSE’s, smashed all of my target grades, and was in sixth form, beginning to think about applying for uni to do teacher training. My illness resulted in a sixth month stay in Manchester Childrens Hospital – a very far way away from the rural life I usually lead. This resulted in the inevitable – my friends moving up a school year to year 13, while I started over in year 12, once I was home from hospital. My whole life had changed, and I found it so difficult to relate to people my own age. My family always say that I may be 21, but I have the life experience of a 40-year-old. I felt so desperate – like my life had been destroyed and I was never going to be able to accomplish my dreams; and that is where I was completely wrong.

Having always enjoyed writing, I took to the internet to try and find a club to join which would allow me to enjoy this hobby again. This is when I found Dove Cottage Young Poets, a group run by poet Kim Moore and funded by the Wordsworth Trust. I didn’t know anyone who went to the group, but decided I had nothing to lose. 

I had always wanted to be a writer. In Primary school I received the leavers certificate for the person “most likely to be a writer”. It was in high school that practicality took over – I decided to train to be a teacher – because writing was never going to pay the bills. Despite this, I ran the school creative writing club from year eight through eleven, and wrote many short stories. I still had the dream of being a writer in mind, although I was definitely listening to my head over my heart when it came to career prospects. 

The first year after coming out of hospital I felt I had nothing to lose. It took a few months of writing before I could allow myself to write about my illness and disability. I was so used to my conditions being the only thing people saw when they looked at me that I didn’t want my writing to be about that as well. However, I quickly learned how unaware the general population was regarding disability issues. I knew I had to start writing about that. First of all I started my blog, www.hannahwritesablog.co.uk . Where I started listing all of the medical and non-medical things that are going on within my life. I started the blog because when I went out of the house, the only thing anyone wanted to talk about was my illness. The blog has become so much more than a place to refer nosey people, it became my online space to give my opinion on the world. I also started to send off my poetry to journals and magazines – and had a number of acceptances.  This all gave me confidence, and also acceptance of my new body and experience of the world. 

Poetry has been so much more than a hobby for me. It has allowed me to explore where I now fit in within the world. It has given me the confidence to read in front of audiences and get away from the ‘rat race’. I don’t think you realise how restrictive school and work are until you are outside of that way of thinking. In many ways I am happier than I have ever been – and in other ways I am more depressed than ever, thinking of a life that could have been. Poetry has been a therapeutic and important thing for me, I feel privileged to have my first poetry pamphlet published and to have the opportunity to work alongside festivals, bloggers and to have made a whole host of writing community friends. I never thought poetry was something that I would grow to love. I think the intensive ‘unpicking’ of poems in school killed them for me – it was more about literary devices used and hidden meanings needed for essays, than an experience of being able to enjoy and love poetry.

The poem below is taken from my first poetry pamphlet ‘Dear Body’. Which is available for sale on my blog (www.hannahwritesablog.co.uk/shop), which is sold through PayPal.

I also have a Youtube channel where I talk about all things illness and disability which is www.youtube.com/HannahHodgson

Invisible

Watch Rapunzel

as she can’t get to the top of the tower

because there is no lift.

Or Cinderella, 

who can’t get to the ball

because there are no accessible pumpkins available. 

Watch Jack

as he learns to live with a brain injury

after he tumbles down the hill with his water;

Or Goldilocks

as she can’t find

an accessible bedroom.

Watch the princess

as she gets bed sores

from the pea in her bed.

Watch Snow White

as she recovers 

from her coma.

Watch Aladdin 

surrender his magic carpet license

because he’s having seizures.

So many stories

ignored because

they are not beautiful.

March 2019 Birchbox - 'You Go Girl'

This month's Birchbox theme is 'You Go Girl'.

In honour of International Women's Day and inspirational women out there this month Birchbox are donating a beauty product to Beauty Banks for every order placed in the Birchbox shop.

Inside the box it includes...

The Beauty Crop - Bronzer Compact  in 'Sardinia Sand'

Full size - RRP £8

This long wearing bronzer is filled with antioxidant reich green tea extract to energise and refresh the skin.

Simply dust over the cheeks for a healthy looking glow.

Chella - Clear Eyebrow Defining Gel 

Full size - RRP £15.50

Taming the brows to stay in a lovely shape whist fixing products in place.

Simply brush through your eyebrows to set.

Generation Clay - Detoxifying Clay Mask

Sample size - RRP £28.50

Packed full of natural activated charcoal which works like a magnet to draw out dirt and detoxify, clean, hydrate and reduce oil and minimising the appearance of pores.

Apply a thin layer to skin and leave to set for 10 minutes then rinse off.

Caudalie - Vinosource SOS Thirst Quenching Serum

Sample size - RRP £29

This product is 97%natural ingredients and will restore the skin's balance.

All Caudalia products use the power of grapes to renew and regulate the skin's hydration levels.

A perfect base for make-up.

Applying morning and night to cleansed skin.

BOD - Glitter Body Scrub in Pink Salt and Coconut

Full size - RRP £4.99

A vegan body scrub infused with ingredients to get rid of dead skin to bring a happy and healthy glow to your skin. Apply to the skin and rub all over to for a soft and scented skin.

Charlotte Tilbury - Scent of a Dream 

Perfume sample - RRP £49

An award winning fragrance with floral hints including lemon, peach, black pepper, jasmine, tuberose, violet and patchouli and amber based notes.

Simply fritz onto pulse points and smell amazing.

Guest post by Hannah for Disabled Access Day 2019

Disabled people have the same hobbies, interests and passions as non-disabled people. We also need to go through the same mundane motions as the rest of society – from getting about our houses, to doing our shopping and going to work. But, whatever our health condition, disability or impairment, we’re still a long way from having equal access to most aspects of daily life. From architecture to attitudes and everything in between, we are not there yet. 

When you think of disabled access, what comes to mind? Is it an accessible toilet, a ramp or a lift? How about hearing loops, British Sign Language, lighing, braille, large text, easy read, personal assistants and the language we use?

Disabled access is so much more than ramps and toilets, and I want to share my thoughts on the least remembered yet most important element of access for disabled people everywhere – ATTITUDE! So, without further ado, here are my top 5 tips for being accessible by attitude:

Be open minded

Attitude begins with open mindedness and understanding that, whatever your background there is, always more to learn. Disabled people, like anyone, are diverse and complex – they have different abilities and strengths and weaknesses and needs. Even people with the same impairment like to do things differently. Disabled people are not one size fits all. Treat disabled access as individual and listen to what people have to say.

Think about your language 

Don’t be scared to talk for fear of saying the wrong thing. Disabled people have heard it all and as long as you have the right attitude and are willing to learn, say what feels right. When I’m accessing a building, event or attraction my general rules are to only ask what you need to know. You need to know how I can access the occasion. This doesn’t matter what my diagnosis is. Start by asking ‘How can I help?’ Don’t ask ‘What’s wrong with you?’ and don’t ask ‘How long have you been disabled?’ Always assume ability (go back to your first question, if a disabled person hasn’t mentioned that they need something, don’t assume that they do). Don’t be offended when a disabled person refuses your help – your offer is still appreciated. Most people prefer being referred to as a disabled person and some people prefer person first language such as ‘person with a disability’. Disability is not a dirty word but always consider whether you actually need to refer to someone’s disability and if not, just reference them as any other person – by their name or pronoun. Lastly, DO NOT make a joke or light-hearted comment about someone’s access requirements (unless you know that person well enough to do so). Just be friendly – good access really is in being a nice, friendly human.

Share information 

Information is so important for disabled access and good access information demonstrates a good attitude. The more you think about the information you give, the more confident I will be in accessing a service. Share all of the information, even the parts where you aren’t quite so accessible. Most people will be much happier to access a service that isn’t fully accessible if you have the right attitude and know they will be supported to access the bits they can and treated with respect. When sharing information think about everything you can offer as well as the room layout, ticketing (if appropriate) and event format. Attitude is Everything have a great template for thinking about access information for people with disabilities.

Always improve 

Ask for feedback on your service from a wide range of disabled people and act on their feedback. If you have a business or you run an event, you can use feedback to sell your service, whilst demonstrating your attitude and making more disabled people feel welcome in future. Make sure you talk to disabled people and ask them how they’re finding it. Most disabled people will be so happy to share their experiences for improvement. I go to a lot of gigs – it’s my favourite thing to do. Disabled access and attitude is so varied in live music; I’ve experienced the very best and the very worst. I almost always give feedback when attending somewhere new and it feels so good to tell someone they’re doing something well. I wish more places would sell their good work through access information (tip number 3) so that more disabled people would access their service. Remember – the purple pound (that’s the spending power of disabled people) is worth £250 billion! Let’s start making disabled access competitive

Spread the word

Be an ally of disabled people by spreading the word of good practice and raising awareness of attitudinal barriers. Tell your friends about all aspects of disabled access and raise awareness of all the barriers that disabled people face – it’s not just about ramps and toilets! Make yourself aware of good initiatives that need to be recognised more, like the Access Card (http://www.accesscard.org.uk/), which helps businesses understand the needs of disabled people. Keep talking about the importance of attitude in disabled access. The more we talk about it, the better we’ll get at it!

Hannah at a concert with a backpack for her enteral nutrition equipment

Hannah's blog can be found here where she writes about different topics including disabled access, live music, life with a disability, and her travels and adventures.

Helpful links about disability access:

• Disabled Access Day
• Euan's Guide - Accessibility guide
• AccessAble - Accessibility guide
• Attitude is Everything - Improving people with disabilities access to live music
• Changing Places - find your nearest Changing Place -specialised accessible toilet and changing facilities