Living with M.E and EDS - What my day looks like

I thought I’d share with you my daily routine and how having both M.E and Ehlers-Danlos affects every part of my day and how I try to manage my symptoms as well as what it’s like to live with disabilities and chronic illnesses; especially ones that limit my energy and ability to function.

I’ve literally been working on this post all month. Blogging is hard with limited energy and when you’re dealing with Post-Exertion Malaise from other things in life but I enjoy it and I love seeing how many people my blog reaches and I hope it helps readers; makes them feel that they’re not alone and hopefully through sharing my lived experience I can share ways on how live with a disability or chronic illness and it will help other people out there. Though blogging is difficult for me at times and I get frustrated that I struggle to not blog as much as I’d like to this is what keeps me blogging. I would have liked to have blogged more this M.E and EDS Awareness Month this has been the main post I’ve been working on. Maybe next year I’ll be more organised and plan ahead.

My day…

Waking up

My blue smart blind

I usually wake up feeling like I haven’t slept. I also have difficulties with sleep so a lack of sleep often makes my symptoms a lot worse during the day which then makes my sleep at night worse. It’s like a never ending cycle but this isn’t unusual if you have M.E.

I find waking up at the same time, 9am, helps. I also have time to wake up and get functioning ready for when my PA arrives. If I could sleep in and didn’t have PA’s each day I probably would and would love to sleep more especially as I often sleep so badly.

I sleep on a profiling bed with a hybrid airflow mattress. My profiling bed allows me to sit myself up, get comfortable independently, raise the hight of the bed for care tasks with my PAs and nurses as well as tilt the bed to manage my POTS. My mattress helps to prevent pressure sores especially as I spend such a long time in bed. I’m also a high risk for pressure sores be cause my skin is more fragile because of my EDS and because I have reduced mobility. 

I also have a body pillow which I find supports my body which helps with my EDS joint instability and also when I’m quite tired and my muscles are weak.

Sitting up slowly

Once I’m awake I lay and allow myself to wake up. My smart blind automatically rises a little at 9.03am and a little more at 9.15am to allow me to adjust to some daylight (my blinds behind my smart blinds are still closed), I just find this helps with my light sensitivity. Usually just my smart blind stays up during the day so my bedroom is kept dim. Sometimes I do open my other blinds if I can tolerate the light. I wear dark glasses as well.

At 9.15am I take my morning medication. I usually read or watch a bit of YouTube until my PA arrives at 9.30am.

I sit myself up in little increments which I find is better and helps my orthotic intolerance and POTS. - With both M.E and EDS it’s very common to have dysautonomia which is problems with the body’s automatic functions. Orthostatic intolerance and POTS: Postural Orthostatic Tachycardia Syndrome, are two conditions under the umbrella term of dysautonomia. Basically sitting and standing are difficult for my body to do and cause dizziness, low blood pressure, high heart rate and feeling faint and actually fainting (syncope). As a result of this I spend a lot of time laid in bed and I have to use my wheelchair.

My time with my PA’s

My PA’s Alison or Emily get here at 9.30am. They make my breakfast for me. Doing small tasks helps me as it helps save my energy for other things and for later in the day, it also helps to minimise the severity of my PEM (Post-Exertion Malaise) later in the day.

As an alternative to agency care I get Direct Payments allocated to me from adult social care to employ Alison and Emily to support and care for me. I’m allocated hours for a mixer of personal care, social support and to do my weekly food shopping.

Getting ready for the day

My bath lift

Usually I get a bath in the morning; because of my hypersensitivity with my M.E I can’t tolerate showers. I use a bath lift to get in and out of the bath and I have help to lift my legs in and out of the bath. On a bad day I’ll have a wash in bed.

I try and do as much for myself as possible. My PA prepares my toothbrush and I brush my teeth. I wash my own face I just have my PA wet my flannel mitt for me. My PA’s do wash me as this is something I struggle to do and I’m usually getting tired by this point. I do break the tasks down so after each task I’ll rest so I can be in the bath for some time. Towel drying is a joint task. I’ll get dressed on my bed which my PA help me with and I also have barrier creams put on me to prevent or treat pressure sores. 

If I’m having a bad day I might put on clean pyjamas and have a PJ day but as much as possible I try to wear ‘day clothes’ to help with my sleep. I’ve found maternity jeans a great tip for wheelchair users as well as for comfort laying in bed.

I often wear funky compression socks which I find helps with my circulation and blood pressure. Sometimes though I find the tightness can irritate my M.E’s hypersensitivity and the pain I get in my legs when my M.E flares-up.

I have to be careful when dressing and undressing because of my EDS as my joints are so unstable and cause easily sublux or dislocate.

I also have to deal with my SPC catheter. I have bladder failure because of my EDS as EDS can affect organs in the body; my EDS also affects my digestive system and heart. I like to choose a tubie pad set that will match my outfit of the day. I also like the wear bag covers as I feel more comfortable and confident with a bag cover and line cover especially if I have to go out. I’ve got some cute sets like yellow ducks, dinosaurs and floral designs.

Once I’m dressed I’ll transfer into my wheelchair and I’ll do a self-care skincare routine. I’ll also brush and style my hair. When Emily is working I’ll ask her if she can braid my hair. I find braids great as I love my hair braided and it keeps my hair out the way for a few days.

My PA’s will also ensure I’m wearing my CareLink watch which detects falls or I can press it should I need help in an emergency - like the time when someone came into my back garden at 3am or when I had a severe asthma attack.

I’ll also put on my CMC thumb braces on both hands. These are the only two braces that I wear all the time as I get a lot of pain there and I use my hands a lot. I’ll put other splints and braces on when needed such as post-dislocation or if a joint is being particularly painful or unstable, or to support it when doing a task like typing or writing.

After getting ready for the day 

Once I’m ready for the day my PA will make me a hot drink. I always drink drinks with a straws and hot drinks at a cooler temperature. Often I’ll drink out of a lightweight lidded cup too as I have weak wrists so holding and drinking out of a mug is often difficult for me. I find straws really helpful and now with the ‘straw ban’ I ensure one is always on me. Lidded cups and lower temperature drinks are also safer for me.

Usually my PA’s finish at 2pm during the week and 12pm on a weekend. On a Tuesday Alison does my weekly shop for me so she’ll finish early.

If I have a medical appointment I will ensure it’s within the window of my PA’s hours so they can take me. I also need someone with me at all times when I leave the house in case of emergencies or I start to become unwell or I get tired etc. At appointments my PA can also sometimes add in information on my behalf at appointments too which is really helpful especially as I get forgetful and brain fogged. They can also assist me like if I need to get undressed and into a hospital gown if I’m having a scan or just provide me with emotional support.

Sometimes if the weather is nice I like to go out for a ride with my Batec - my wheelchair power add-on. Getting out the house with my Batec massively helps my mental health as I spend so much time in my home. Sometimes I go around my estate or to the postbox but even if I just go up and down the road it’s nice to get out and get some fresh air.

We do other thing activities too like batch cooking homemade meals, baking and crafts. 

What I do during the day…

One of the first things I try to do after my PA leaves is do my daily bullet journal for the day. I’ll write my to do list and any reminders to myself as well as upcoming appointments etc. so I’m able to plan and pace my day. I traffic light each task on my to do list to help with activity management. My bullet journal is like my second more functioning brain and I’d be quite lost without it. I also use it to track my health, symptoms, self-care and sleep and other things like my spending and books I’ve read.

I have regular rest periods throughout the day where I’ll lay in bed and listen to an narrative soundscape or a mindfulness meditation. I find rest doesn’t restore my energy levels but it just puts a pause in my day and allows my mind and body to just stop especially before I hit the crash point. I find that if I don’t rest my energy levels will complete crash and my Post-Exertion Malaise will be a lot worse. I’ll also lay with a podcast or audiobook as restful activities.

My over bed table for activities

I try to set one ‘main activity’ each day, like today it was to type a bit of this blog post. Some activities I’ll do on my own others I’ll do with my PA depending on the activity and day as well as whether I’m having a good day or not. On bad days resting is more of a priority than doing an activity,

I have to spend most of my day in bed and I’ll know the signs for when my body is needing to lay down with my Orthostatic Intolerance. 

I do try to spend some time out of bed each day and that’s one reason why I love my new wheelchair as it allows me to be able to get around my home. Plus being seated in my wheelchair is much safer for me and it is more manageable for my OI and POTS. I try and sit in my front room for lunch and tea at least and spend a little time at my craft desk too just for 5-30 minutes if I can. It just gives me a change of scenery from my bed. In the summer when the weather is nice I’ll try to go out in my garden; I have a garden bed so I can lay down and enjoy being outside.

If getting to the bathroom is challenging I’ll attach a day bag to my catheter so that helps my M.E.

I’ll normally do a mixture of resting, laying and listening to my audiobook or a podcast, doing a activity if I’m able to and just general other stuff all mostly in bed until my PA comes back to work around 3.30/4pm.

If I have an appointment that day (not just medical appointments but dates in my diary for say Dad visiting) my day will be dedicated to resting, as will the day before and the days after as after I will experience PEM. I try to limit my appointments and space them out as much as possible to give myself time to recover.

Post-Exertion Malaise

PEM is a key symptom of M.E, fatigue also comes along with EDS as well. PEM is a flare-up of M.E symtoms as well as an experience of other symptoms following any form of physical, cognitive, emotional or social activity. PEM can com on hours or days after the activity and recovery can take days, weeks, months or even longer. Even the smallest things like talking can cause me to experience PEM. The hardest thing I find with PEM is I don’t know when it will really hit me, how bad it will be and how long it will take me to recover. 

I experience PEM daily and by mid afternoon around 2/3pm my body is struggling with PEM from my morning routine and any activity I’ve done that day like my ‘main activity’ is really affecting me.

I also experience PEM from other activities like appointments or spending time with my Dad. The PEM from bigger things like this they will crash me much more and my M.E symptoms can be much worse and the crash will last a lot longer and will take longer to recover from. I might struggle to feed myself,  be unable to drink out of a cup, unable to talk and move, my pain levels are high, I struggle to tolerate noise and light much more than normal. These are a few examples of just how severe M.E can be for me just from simply leaving the house to see a doctor.

My bedroom and bed space

My bed with accessories:
Giraffe hands free bottle
Flexzi stand
Body pillow

Most of my day is spent in bed at various degrees. Having a profiling bed is so helpful as I can independently lay myself down and get myself comfortable. My body pillow is very supportive both for my EDS joints and the weakness I have in my body because of my M.E especially when I’m tired or having a bad day.

I’ve developed a bit of a set up in my bed space. I have everything I need organised into my bedside draws. I also have a Flexzi stand for my iPad and kindle (which I also have a remote controlled page turner for which is great for reading laid down). I also have a handsfree water bottle or I can swap the bottle and be able to drink hot drinks handsfree - this is especially helpfully when I struggle to hold, lift or drink out of my lidded cups whether it be because my M.E has flared up or because my EDS is bad in my wrists and hands. I also have my over bed table which is great for putting things to hand on, or eating meals off or do activities in bed.

I keep my bedroom low-sensory. I usually have my blinds closed and my roller blind is voice controlled so I can close that if I need more darkness. It’s nice and quiet too but I often wear my noise cancelling headphones as well.

I find smart technology really helpful when living with severe M.E. I can voice control my heating, fan and lighting too; alternatively I can control everything on my Apple devices. I have soft lighting in my bedroom and I love fairy lights and I love my remote control mushroom lamp which I can set a colour I find I can tolerate and I can dim/brighten or use it as a sensory lamp.

Evening PA time

I’m usually quite tired by the time my PA gets to me around 3.30/4pm. I have a list of ‘bad day needs’ for when I’m having a bad day and I might not be that talkative when I’m tired and in pain. I find my EDS pain gets built-up during the day too.

In an evening my PA’s will help me get ready for bed. I’ll have a wash in bed which my PA’s do pretty much most of. I use a towel off foam wash from NilAqua that I highly recommend. More barrier cream to put on.

I’ll rest in bed while my PA makes my tea. I’ll eat my tea either in my from room or in bed depending on how I’m feeling.

My PA will do other jobs while I’m eating.

Before they leave they’ll ensure I have everything I need for the rest of the evening and night time.

Once my PA has left and my evenings

I usually go back to bed if I’m not already in bed once my PA has left. I’ll rest and listen to a soundscape a well as lay and listen to a podcast. I might also watch some television (I’m really into police body cam documentaries on YouTube at the moment). I don’t watch a huge amount of television as I find it quite sensory overwhelming. I’m also really enjoying colouring at the moment I’m a bit obsessed with my pens and colouring pages from Calm Over Chaos currently - I’ll colour and listen to a podcast for a bit as my evening activity if I have the energy. I have a very busy mind so I find resting really difficult - not helpful when you have M.E and you’re feeling exhausted. I find I can just about entertain myself with podcasts or my audiobook or reading my kindle. I try to do restful activities in an evening as my energy levels are low and I’m pretty exhausted and in pain. I find I need to distract myself from my pain and symtoms as well until I’m ready to sleep.

If I’m having a good evening I can get into m wheelchair and get myself a hot drink like a decaf coffee. I like flavoured decaf coffees. If I’m not having a good evening I’ll ask my PA to leave me a coffee in a thermal tumbler so I can still enjoy a coffee later in the evening.

Sleep

Sleep is really difficult for me. I have some evening inf where I accidentally fall asleeep while listening to a podcast and I’ll wake up in the morning with my glasses still on and my duvet still folded over unswept in. Then I get other nights where I just cannot sleep at all sometimes because I’m in pain other times it’s just  because my body refuses to fall asleep. Thankfully I do have an appointment with the sleep clinic next month so I’m really hoping them can help with my insomnia as I have insomnia a lot and when I have a lack of sleep my M.E is much worse the next day.

M.E and Me

Today is M.E Awareness Day

I got ill in 2014

After I got the flu

For years I was told over and over 

‘It’s just Post Viral Fatigue Syndrome,

With rest you’ll recover’

But I did not recover 

I felt frustrated 

I blamed myself 

I couldn’t work out why I couldn’t snap out

Of my overwhelming fatigue

And fog that clouded my brain

And why every step I took

Felt like I was being weighed down

I thought it was me

I thought I was doing something wrong to feel this way

I tried everything

Then in 2017

The 4th July to be exact 

I finally got a diagnosis 

I got told I had M.E

Myalgic Encephalomyelitis

Suddenly I could stop blaming myself 

I had a name

My symptoms were not my fault 

What I was feeling was real

But there was no cure

Not even a treatment 

No magic pill to make the M.E go away 

I must simply learn to live with my M.E

As the years went by

My M.E faded into Severe M.E

I am a statistic 

1 in 4

The 25%

One of the #MillionsMissing

I live in my bed most of the day

I get around in my wheelchair

Rare trips out to feel the fresh air on my face

My Batec is my happy place 

Where I feel free 

I try to have some normality 

Spend time at my craft desk

Or even do activities in bed

But for every action there is a reaction

And the M.E protests with

Post Exertion Malaise

Those three words

Mean such a lot

Sometimes the smallest thing

Will flare up my symptoms 

It’s like having the flu

And the worst hangover 

And not having sleep for a week 

All rolled into one

That’s how I feel all the time 

What did I do to feel so bad

Was doing that really so bad

For the M.E to over react 

For my M.E to leave me

Unable to sit; to talk; to move

Only able to lay there in the dark

With only my audiobook on the lowest volume for company

The pain in my body

In my legs especially

To high for the pain score to register 

How long will this crash last 

Days, weeks, months

Or even years?

I’ve only ever stabilised and dipped 

I hold onto hope each time I dip

That I will recover back to how I was before 

There is no end in sight 

Help is hard to come by 

Doctors don’t understand M.E

Services are a postcode lottery

Care was a fight

I only got care

When I became so unwell

I cannot care for myself that much

I rely upon someone else 

For all tasks of daily living

Medication only offering me some relief 

Trying every option

My mental health affected

By my chronic illness 

Quality of life 

Sometimes I wonder what that is

I’m only 32

When will this M.E nightmare end

DecodeME was promising 

Changes in my DNA

Markers in my immune system to explain the onset

And in my nervous system to explain my pain

Proof that it’s not all in my head

Hopefully they’ll develop a breakthrough 

Some sort of treatment 

Each day is a struggle 

A fight with my multitude of symptoms 

Treading on eggshells 

Trying not to overdo it

Trying not to crash 

Grieving for me pre-M.E life

For now until a cure is found 

It is just M.E and me

How to make an easel fold card

The finished card

Easel fold cards are really easy to make and can be decorated for any occasion. You could use themed patterned paper liked birthday or winter themed paper if you’re making this into a birthday or Christmas card or you could use seasonal themed paper depending on what time of year it is.

You will need:

• 2 pieces of A4 card
• Co-ordinating plain and patterned paper
• A paper slicer board with scoring blade or something similar to cut and score
• Creasing tool
• Double sided tape
• Double sided foam squares 
• Whatever you need to decorate your card

Pieces you’ll need

White card:

1. 25cm x 11cm - scored at 5cm and 10cm (see photo)
2. 24cm x 9cm - scored at 12.5cm (see photo)

Plain paper:

Piece 1 - 14.5cm x 10cm

Pieces 2 - 10.5cm x 4.5cm - you’ll need two of these; either same or different colours 

Piece 5 - 11cm x 8.5cm

Piece 6 - 10.5cm x 8cm
This can either be plain paper or a subtle patterned piece of paper 

Pattered paper:

Piece 3 - 14cm x 9.5cm

Piece 4 - 10cm x 4cm

Tip: use lightweight paper instead of plain and patterned card as this can affect the ability for the card to stand up.

Making your card:

1. Cut all your pieces of card and paper

2. Score the 25cm x 11cm piece of card at 5cm and 10cm as shown in the photo above

3. Score the 24cm x 9cm card at 12.5cm as shown in the photo above

Tip: Score on both sides of the card as you get a neater fold

4. Crease along the edges on the 25cm x 11cm piece of card making a mountain fold

5. Crease along the edge of your other piece of card

Mountain fold

6. Stick down your pieces of paper to the card as shown in the photo below

7. Take your second piece of folded card and fix the longer folded length as shown below to the other piece of card 

8. Stick down your two pieces of paper to the front of the second piece of card as shown below

9. Make a tab for your card to be tucked into so it can stand up - I die cut out two pieces of patterned paper and a piece of card to stick to the back of the larger circle to strengthen it - if you don’t have die cut shapes you could use shaped paper punches like circles, squares or hexagons

10. Put double sided foam squares on the bottom part of your shaped tab - ensure there is plenty of room for the card to sit inside the tab

11. Fix the foam tab centrally to the bottom section of your card as shown in the photo below - you may need to adjust how high or low you put it so that the card sits like an easel; you may also need to adjust the angle of the mountain fold so it stands freely

12. Now for the fun part - decorating your card! - you can use metal die cuts, die cuts from a Cricut machine, stickers and other embellishments - try not to make your design too heavy as this can affect the ability for your card to stand

A normal C6 envelope will fit this card - you could even make your own envelope to match the design of the card if you really want to and are able to

Now to write in your card - you can lift up the flap and there’s plenty space the write your message; all that is left is to gift your card to someone special

FND and mobility aids

April is Functional Neurological Disorder, FND, Awareness Month. FND is a problem with the brain and nervous system’s inability to properly send and receive messages around the body which can result in a wide range of symptoms.

One symptom of FND is altered gait and other mobility problems. This is a symptom I have. When I walk my brain struggles to communicate with my legs so my gait is all over the place and I’m very off-balance when I walk. I also get reduced sensation in my legs which also makes walking difficult.

I’m an ambulatory wheelchair user. This means that I can walk a little with my crutches but I also need to use my wheelchair to help me get around. In the UK around a third of wheelchair users are ambulatory. At home I sometimes use my crutches, but most of the time I now need my wheelchair to get around. But when I go out I always use my wheelchair as I struggle walk at all when I go out. I’m also safer in my wheelchair as I can’t fall and it’s also safer should I have a non-epileptic seizure which is also another aspect of my FND. My symptoms are also better managed when I’m sat down.

Using a mobility aid doesn’t mean you’re “giving up”. Mobility aids are here to benefit us and aid and support us. They’re not a sign of weakness or failure they’re a sign of strength and wanting to live your life to the fullest as possible.

The decision to start using a mobility aid might be something you’ve chosen yourself, or it might come from a healthcare professional. It can be a big step to start using a mobility aid as you might feel that it’s a sign that you’re now more unwell. This might be the case for some people but not for everyone. Using a mobility aid can actually improve your life. It will give you more freedom and independence and quality of life. They can also help you to better manage your symptoms like feel less fatigued, reduced pain, better management of heart rate, more stability, save energy and more as well as offer safety.

Mobility aids don’t just help us physically, they can help us emotionally too and give us more confidence. We don’t have to worry about things like falling, passing out, becoming tachycardic, being off-balance, not being safe, having no place to sit down to rest and so many more reasons.

Some people always use a mobility aid and others just use it when needed like on bad days or when going out. Others have a variety of mobility aids and use different aids on different days depending on their symptoms.

When my FND started, before I was diagnosed, so I didn’t know what was wrong with me but I was struggling with my mobility I used to carry around a fold-up walking stick and I’d use it when needed and then I used it all the time. By the time I was diagnosed my physiotherapist had then said I should start using crutches. As time went on and my mobility and overall health worsened not just my FND but my other conditions I asked my neurologist if a wheelchair would be of use to me. I wanted his option as I didn’t want to decondition my mobility. He absolutely thought that a wheelchair would benefit me and he knew how determined I was to not decondition and he said that he knew that I’d know when I would and wouldn’t need to use my wheelchair.

Wheelchair Services provided me with a wheelchair and it really did benefit me. I was able to go out more instead of struggling walking with my crutches; getting tired and then completely crashing and making myself more unwell. As the years went on and my health continued to decline I needed to use my wheelchair more often and my NHS wheelchair wasn’t meeting my needs. I now have an ultra-lightweight active wheelchair, my GTM Mustang, which I love because it meets my needs and it’s given me back my freedom and independence as well as improving my quality of life. 

Another mobility aid I have, which has to be one of the best things I’ve ever bought is my Batec Mini 2. It’s a power add-on for my wheelchair so I can easy go zooming around.

My Batec has really helped to improve my mental wellbeing. Just being able to get outside and ride around and get some fresh air or ride to the post my penpal mail or to the shop. I’m in my little happy place when I’m riding with my headphones on and saying hello to dogs out on their walk.

When I first started using a walking stick I felt nervous using it and being seen using it as someone in their early 20’s as I always associated walking sticks with older people; not someone young like me. I used to think about what people thought of me using it when I got on a bus and then went and sat on the reserved seating. I never really saw people my age using mobility aids.

That’s one positive that has come out of the chronic illness community; seeing other young people my age using mobility aids. It really helped me to not feel isolated and to realise you can need a mobility aid at any age and it helped me to accept using mobility aids. I also saw to variety of what jazzy mobility aids that were out there too, or the various ways you could decorate your mobility aid.

Jazzed up wheels and my floral crutches

One thing I’ve found over the years that has really helped me accept my mobility aids is having mobility aids that represent ‘me’. I personally could never accept long-term using the drab gray NHS walking sticks, crutches or rollators. The first walking stick I bought was floral patterned and then my first pair of crutches were silver with spots on in various shades of purple and a purple ferrules, handles and arm cuffs. My crutches now I have a custom design on which is a Cath Kidston floral print. My NHS wheelchair I jazzed up with spoke covers and pink push rim covers. I also plan on adding a bit of ‘me’ to my GTM wheelchair at some point.

I love what stylish mobility aids there are out there, especially for younger people who don’t want a drab NHS grey mobility aid, but unfortunately like most disability things stylish walking sticks, crutches, rollators and wheelchairs they often come at high cost. You can do DIY decoration on mobility aids such as on the more expensive side spoke guard covers to low cost coloured spoke covers for example, or using a can of spray paint. It’s nice to see how people have personalised their various mobility aids as you can see the expression of them as mobility aids are sort-of like an extension of ourselves and part of our bodies.

IBS Awareness - Living with IBS

April is IBS Awareness Month.

What is IBS and it’s symptoms?

Irritable Bowel Syndrome (IBS) is one of the most common digestive conditions. Around 1 in 5 adults in the UK have IBS. IBS is defined by belly pain such as cramps as well as wind, bloating and distension along with a change in bowel habits and changes to stools. Other symptoms include fatigue, nausea , backache and bladder problems. 1 in 3 people have IBS-C the C being constipation and another 1 in 3 have IBS-D with D being diarrhoea. Others with IBS might experience IBS-M which is a mix of experiencing both constipation and diarrhoea. Symptoms can be present daily for some people but for others symptoms can come and go over weeks or months. Symptoms can also alter over time. Symptoms often ease after a bowel movement. Symptoms can be unpredictable which can be challenging for some people.

Treatments for IBS

• Healthy eating and IBS dietary management 
• Identifying foods that trigger symptoms
• The Low FODMAP diet
• Probiotics
• Medication 
• Gut-specific behavioural treatments 

My experience of living with IBS

I’ve had IBS for many many years now. I feel that despite how common IBS is because IBS can be quite an embarrassing condition to have we don’t talk about it enough, especially for people to understand what it’s like to live with it and just how disabling it can really be. This means that IBS lacks awareness and understanding. People often think that IBS is just have bad belly cramps but there is so much more to living with IBS than that. The pain in your abdomen can be so intense that all I want to do is curl up in bed with my heat pad and moving makes the pain worse. Going to the loo with IBS is such an ordeal too and something I often dread. There’s also following my FODMAP diet to manage my IBS so there’s certain foods I can’t have or can have a little of; if I were to eat these foods it would result in my IBS flaring up. Clothing is also something that can be difficult when you have IBS. When I’m feeling bloated and uncomfortable I just want to wear something comfortable as tight clothing like jeans aren’t comfortable. I often actually wear maternity jeans, not really because of my IBS; mainly because they’re more comfortable to wear as a wheelchair user and as someone with a catheter but they’re also really comfortable when I am feeling bloated and uncomfortable. There are also extra costs to having IBS. Many people with disabilities and chronic illnesses face extra costs to buy things to help them manage their condition*.

There are many times when I’m in the bathroom or in bed hugging my heat pad to my stomach in severe pain because of my IBS. I also take medication to help with my symptoms which help. 

I also went on the low FODMAP diet a few years ago which really helped me identify my food triggers and now following the low FODMAP diet with the foods I can eat fine or a little of really has made a difference. I’d recommend the low FODMAP diet to anyone with IBS, you just have to start it under the guidance of a dietician so you’d have to ask for a referral from your GP or gastroenterologist. 

I personally like to do a lot of things alongside medication so as well as my heat pad and diet I drink plenty of fluids and I also find some herbal teas like mint tea, and I have a special digestive tea blend I drink as well to help settle my symptoms too.

Some of my symptoms can be quite difficult to live with. I find the belly cramps really painful. It doesn’t help that my Ehlers-Danlos also causes problems with my digestive system. Some symptoms are quite embarrassing so they can be hard to talk about and get help from medical professionals to sort them out so sometimes I’ve lived with symptoms for a long time before I’ve gotten help for them.

IBS is just a condition that I’ve learnt to live with. I get periods where it flares up and then I get times where it’s manageable. For me my IBS is often experienced as IBS-C so as well as medication to manage the cramps I’m prescribed laxatives which I take when needed. I also find having a healthy diet with foods that are good for digestive system help too alongside staying hydrated.

At the moment I am having some problems complicated by my Ehlers-Danlos so I’m waiting to see the gastrointestinal consultant and go from there if any tests are needed to investigate etc.

* Read about Scope’s ‘Disability Price Tag’ on extra costs here.

Things I find help my IBS

• Heat pads or microwave Warmies
• Portable single use heat pads that I can take out with me
• Wype* toilet paper gel - you just apply it to toilet paper, wipe yourself clean and pop it down the toilet - it’s much more environmentally friendly than toilet wipes
• Medication both prescribed and what you can get over the counter 
• Boot’s ‘IBS Cramps Relief’ (same medication as Buscopan)
• Boot’s ’IBS Wind & Bloating Relief’ medication
• Carrying a ‘Can’t Wait’ card in my purse to show that I need access to a toilet or Changing Places
• Keeping a RADAR key on me wherever I go - this gives me access to more public disabled toilets and Changing Places 
• Herbal teas
• Mint tea
• Happy gut tea
  
• Some yoga movements can help with my cramps - I can do these laid in bed

Resources

• Guts UK - Information on IBS
  
• Order a free ‘This Can’t Wait Card’ here
• Order an official RADAR key here
• Changing Places toilet map

1 year wheelachairaversiry!

This month marks one year since my GTM wheelchair finally got delivered to me after months of waiting for the whole process to be completed. After I ordered my new chair I created in my bullet journal a countdown marking off the days and months until delivery day. I was just so excited for it to arrive once I’d put the order in so the countdown kept me going through the wait.

This past year has been amazing with my new wheelchair. My quality of life really has improved by having the right wheelchair for me and it’s given me back so much freedom and independence.

Before

My previous wheelchair which Wheelchair Services had provided me with an InvaCare Action 3 wheelchair which was pretty much a standard wheelchair. It had no customisations for me other than it being fitted for my size.

I’m very grateful that my Wheelchair Services provided me with a wheelchair as not all NHS Trusts provide wheelchairs to ambulatory wheelchair users.

My InvaCare wheelchair

When I had my NHS wheelchair at first it suited me fine and met my needs. However as time went on and my health worsened and I needed to increasing use my wheelchair more I found that it wasn’t fully meeting my needs. At times my wheelchair was more of a hindrance than a help as it was difficult to transport and as I needed to take it with me every time I went out. The chair was also very heavy and the backrest wasn’t the correct hight so it was difficult to self-propel due to the chair’s weight and the backrest caused problems with my shoulders and having Ehlers-Danlos this made it especially problematic. I also couldn’t use my NHS chair around the house so when my symptoms were bad I was often left stuck as walking around my home with my crutches wasn’t possible or safe.

My NHS wheelchair was more made for occasional use, like for someone pushing me to take me to a hospital appointment or around a shop. It definitely wasn’t made for regular independent use and as my health worsened my NHS wheelchair wasn’t meeting my needs and it was limiting my freedom, independence and quality of life. As a result I began saving and looking into to get a wheelchair that would meet my needs.

As you can see from the photo it’s a pretty standard stereotypical wheelchair; nothing fancy like an active wheelchair.

Looking for a wheelchair 

I tried and tested both manual and lightweight folding electric wheelchairs. I did a lot of research and read a lot of reviews on different makes and models of wheelchairs and spoke with other wheelchair users including wheelchair users with M.E and EDS to see what they felt worked for them.

Initially I decided to buy a power add-on and again I tried and tested different attachments and again did my research, read reviews etc. When I tried out the Batec Mini 2 I fell in love with it immediately. I loved the suspension and how easy it was to transport and store (I have very limited space in my bungalow) plus I love how it connects to the wheelchair. The docking bracket is so easy compared to some other attachments I tried where they connected to the frame of the chair which I really struggled with as well as the damage it would do to the frame. You can read my Batec review here.

When my Batec arrived in August 2023 it gave me back so much more freedom to be able to go out. It’s probably one of the best things I’ve ever bought. After buying my Batec I decided to wait about a year before going ahead with getting a suitable wheelchair. However my InvaCare Action 3 wheelchair wasn’t made for Batec adventures and going up and down curbs etc and wheelchair services had to come out a few times to fix my chair. Very soon after getting my Batec I made the decision to just go ahead and get myself the wheelchair that I desperately needed; not just because of my Batec but because my Batec gave me freedom. It made me realise how little freedom I had with my InvaCare wheelchair and how much I desperately needed a wheelchair that would meet my needs.

I was really impressed with the customer service I got from Cyclone Mobility when I bought my Batec from them and I decided to demo some of their wheelchairs. In my research I really liked the backrest system on Aria wheelchairs and that was a makes of chair that Cyclone Mobility stocked so I asked them to bring one of them to my home demo along with some other makes and models with the features I wanted in my new wheelchair.

From having my NHS wheelchair I sort-of knew what I did and didn’t want in my new chair. 

Demo chair

When I had my home demo initially Alex brought me the Aria chair and an and another make and model of wheelchair. I really did like the Aria wheelchair but talking to Alex who is a wheelchair user himself, he from personal experience didn’t recommend the Aria wheelchair and recommended a GTM wheelchair to me. His chair was a GTM chair and he said they’re made to go really well with Batec’s so he went to his van and brought me a GTM Mustang chair to try out. Sitting in an ultra lightweight wheelchair made it so much easier to get around in compared to some other chairs I’d tried out. Also the demo GTM chair had gekko grip CarboLife push rims and the gekko grip made pushing the chair even easier. I realised that with options and customisations I could be a manual wheelchair user and I liked the active feel of a manual wheelchair.

I did some more research into GTM wheelchairs and spoke with some people who had GTM wheelchairs. Gem at WheelsNoHeels was really helpful. She has a GTM Jaguar and recommended Spinergy wheels to me as these are lightweight wheels so would make my chair lighter making it easier to push as well as lift if taking them off my chair.

After I decided that the GTM Mustang was the chair for me Alex came back out to me and I ordered my chair.

A lot of measuring goes into a custom wheelchair and there are so many options to go for. Initially I thought I wanted a white framed wheelchair. But then I thought why not spend a bit more and get a custom colour frame. I did want a pastel lavender/lilac colour but unfortunately the closest colour they could do was dark purple which I didn’t like as I like pastel colours. So eventually I went for polished metal frame as I liked Gem’s GTM Jaguar wheelchair. I enjoyed customising my new chair and it was helpful to have Alex as another wheelchair user to ask both his professional and personal advice on some of the options. I could tell that GTM went with Batec’s as one of the customisations was to add a bracket for a Batec. After I initially ordered my GTM Mustang I contacted Alex a few times to make changes to my order like changing plastic to carbon fibre and the spoke colours when they couldn’t do my custom lilac colour frame. I kept changing my mind on choices as I wanted my new wheelchair to turn out just right.

So, did I get my chair right?

On the whole yes. The seat is much more comfortable as I’m no longer sat at a 90 degree angle which I found uncomfortable. The backrest is ever so slightly tilted back and my seat is an ergo bucket so it slopes upwards helping with back and hip pain. I’m glad I swapped plastic for carbon fibre - well worth the extra expense as it looks so much better. I’m also definitely glad I swapped from small to large CarboLife push rims and the gekko grip was well worth the expense too as I wouldn’t be able to push my chair otherwise. I like my Spinergy wheels too. I like the side guards going over the top of my wheels too. The pouch on my backrest is so handy. The backrest also folds down so much better compared to how my old chair folded. I could say more but I think this sums things up well. My GTM chair is so easy to transport. On the whole for my first chair I pretty much got everything just right.

Some of my chair’s features

The main thing I wish I had gotten was fold out push handles. The main reasons why I didn’t get them were because I thought they might be too low down for someone pushing me but I can now see that it would have been fine. Also I wanted to be independent in my new chair; I wanted to break free from having people push me like a little old lady and be independent and push myself around. Thankfully it’s not been a major problem as it’s very rare that I do need a push and usually it’s not for a long distance so we use the bar on the back of my chair. When I go to places or I’m having days where I’d struggle to push myself I’d take my Batec with me. So I’ve found that though I wish I’d gotten them it’s not a problem that they’re not there.

Sometimes I feel like my chair is a bit plain but then on the flip side it means it goes with any outfit. Sometimes I do think about my initial wish for a white frame. I am considering jazzing it up a bit maybe?

When I got my pressure sore Wheelchair Services also provided me with a Jay Extreme Active seat cushion that has really made a difference.

This past year 

Getting out and about

The past year since having my GTM chair it’s opened up so many more opportunities for me. As my new chair fits so well with my Batec I love getting out whenever I can whether it’s a ride around the block, to the Co-op or putting my wheelchair and Batec and chair in the car and riding around the Country Park.

I’ve also gained so much confidence as a wheelchair user too and doing my two days of wheelchair training with Stuart at Freedom Wheelchair Skills really helped with that too. (I still really want to learn and perfect how to do backwards balance in my chair aka a wheelie as it’s such a key as a wheelchair user).

I also feel happy in my GTM like being seen in it in terms of the aesthetic of my GTM chair compared to how my InvaCare wheelchair looked.

I did try out some LoopWheels but I should have gotten a trial of the LT LoopWheels but I didn’t but decided to leave the idea of getting LoopWheels for now as I love my Spinergy wheels. You can read about my trial of LoopWheels here.

The future

I’m so glad that I now have a wheelchair that meets my needs and has improved my quality of life and given me back freedom and independence. I’m also grateful that I have a wheelchair that means I can manage my symptoms and not be held back. Yes I still have to spend a lot of time in bed but it’s nice to wheel to my craft desk or to get a drink or even the bathroom some days. 

I look forward to many more adventures with my Batec.

I do think I’ll try the LT LoopWheels at some point.

I know maybe a time in five or more or less years when I might struggle to push my chair and I’m already saving for future options like SmartDrives and such power assists should I need them in the future.

Resources 

Gem has a great four part series on her YouTube channel on buying a custom wheelchair which she did when she bought her GTM Jaguar. You can find these videos in this playlist here along with some other videos on choosing wheelchairs and power add-ons.

I found this series invaluable when I was buying my custom wheelchair. Gem’s channel WheelsNoHeels is a great channel in general I find especially if you’re a wheelchair user or if you have a disability/chronic illness.

My life with FND

Today is UK FND Awareness Day. 

FND stands for Functional Neurological Disorder this means that the function of the brain is fine, think of the brain like a computer and FND like the computer’s software. The computer itself is fine but the software isn’t working properly. This analogy is used a lot to explain FND. With FND the structure of the brain is fine but the brain’s and spinal cord’s messaging system isn’t working properly. This results in a wide range of symptoms. FND is experienced differently by each patient.

My FND symptoms

I was diagnosed with FND by an FND specialist neurologist on the 4th July 2017 after living with undiagnosed symptoms since 2014. Initially my FND began with mild non-epileptic seizures like absence and myoclonic seizures that I didn’t know what they were but I just thought I was tired and overworked. Then in February 2014 my life changed forever and I had my first tonic-clonic seizure. After my first tonic-clonic seizure they just spiralled and I was having multiple seizures a day.

As time went on I started experiencing other symptoms that I couldn’t explain. It was hard living with undiagnosed symptoms as you don’t have answers for what is happening to you and you feel helpless and desperate for answers and to know if there is a way for them to stop. 

I also experienced a lot of negative experiences from medical professionals such as gaslighting and refusal to treat me according to my care plan as some professionals thought I was feigning my symptoms for attention or medication or due to mental illness. This along with other experiences led me to develop medical PTSD so I find clinical settings especially the Emergency Department really difficult places to be in.

Developing FND has really changed my life. There are now a lot of things that I’m unable to do because it’s not safe. I’d love to be able to drive but due to my seizures I’m not allowed; I’d have to be a year seizure free - I can’t even go a week without having a seizure and I take the maximum dose of medication to control my seizures. Thankfully due to this medication I have a lot less tonic-clonic seizures and other seizures. I’ve also learnt what triggers my seizures some of them are stress, anxiety, heat, tiredness, pain and being unwell with an infection. Managing my triggers like staying cool when the weather is hot, managing my energy and pain levels (not easy especially when you also have M.E and EDS!) and keeping on top of my mental health can help to reduce my seizures.

Accepting the use of mobility aids has also helped with my mobility. Before I was diagnosed I carried around with me a fold-up walking stick to use when needed. Then in physiotherapy my therapist said I needed to use a crutch which would offer me more stability than a walking stick. Later I needed two crutches to help aid me walk as my mobility worsened. Then one appointment with my neurologist I asked him if he thought a wheelchair would help me or not and he responded with that he thought a wheelchair would really benefit me and he knew I’d use it when I know I needed to use it as he knew I wanted to keep my mobility as much as possible. The InvaCare Action 3 wheelchair I got from the NHS served me well for a long time but as my health conditions alongside my FND deteriorated and I needed to use my wheelchair more I knew I needed a wheelchair that would better meet my needs. I’ve had my GTM  Mustang, an active wheelchair exactly a year now and it’s made a massive difference to my live. It’s really improved my quality of life like for example if my FND symptoms mean I can’t walk I now have a wheelchair I can use around my home so I don’t have to stuck in bed. Plus I’m a lot safer as I now have less falls. My new wheelchair is much easier to self-propel so I don’t need someone to push me around which makes me feel more independent and gives me more freedom.

I’ve now learnt to live with FND and its symptoms. For me my FND is always there. I don’t get periods where I’m symptom free or experiencing very few minor symptoms and then have flare-ups where my FND symptoms become present for a period of time.

There are different ways I manage my symptoms. I do take different medications to help control my symptoms, for example medication to help with my chronic pain, muscle spasms and dystonia, neuropathic (nerve) symptoms and seizures. I also have prisms in my glasses to help with my diplopia or double vision as my FND causes visual changes. Most of the management of my FND though is self-management and these are things that I’ve learnt and developed over time. For example pacing and activity management, having rest periods or rest days, using my heat pad, doing physio or yoga as I find movement helps, engaging in self-care activities, distracting myself so it takes my mind off my symptoms, sleeping well, massage therapy, using mobility aids and other equipment and aids, staying hydrated, managing my seizure triggers and more. Managing my FND (and my other conditions) is literally built into how I live each day. Inevitably I do have good and bad days, sometimes a bad day can be brought on by a tonic-clonic seizure, high pain or fatigue levels or other symptoms being more present. If I’m having a bad day today like I am now as I type (I type my posts in little chunks to make it more doable to be a blogger with disabilities) - my pain levels aren’t great today and the numbness I get with my FND is more present today too so my PA suggested a pyjama day as I’d be more comfortable and I’m having a day in bed too. This is just one way I manage a bad day and I’ve planned as a distraction to finish this post and to do some colouring which I love as a distraction and self-care activity.

I definitely think medical professionals need to learn and understand what FND is and some of the main FND symptoms patients with FND may experience. I think this will reduce medical professionals not understanding us, like when my symptoms haven’t been believed and it’s lead to poor care and negative attitudes from the clinicians. I think non-epileptic seizures especially need to be understood that they are still neurological in nature and not the patient feigning them for attention or drugs - I think paramedics and A&E staff especially need to understand non-epileptic seizures from my own personal experience. I also think that more neurologists should have an understanding of FND. I’ve been turned down by several neurology services because FND isn’t a condition they treat as FND is such a specialist area and there are so few FND specialist neurologists. I also think more research is needed. There are tests for FND like the Hoover’s Sign for leg weakness and the Tremor Entrainment Test and things like EEG’s can rule out epilepsy. fMRI scans have shown to show FND but fRMI scans aren’t used as a diagnostic tool.

FND really has changed my life upside down and I’ve had to change the way I live my life to be safe and to accommodate my symptoms. Having a disability like FND is expensive as I need equipment and aids to allow me to do tasks safely, easily and/or independently. Wheelchairs and Batec’s definitely don’t come cheap and I’ve had to do a lot of saving up to purchase them. Then it’s everything else I need like hot water dispenser machines as I’m unable to safely use a kettle as when I first started to have seizures I poured a kettle of boiling water on myself so since then I’ve never used a kettle for my own safety. I also have to buy things lids for cups and lidded cups, straws (the straw ban really affected disabled people like myself), adapted cutlery, kitchen aids, heat pads, hands-free water bottles that attach to my profiling bed, my Flexzi stand that also attaches to my bed, grabber stick - the list goes on.

Despite living with FND and the limitations and costs it puts on me it has changed me as a person. I still do grieve for the life I’ve lost at times but my FND and becoming disabled because of it has made me realise what really matters in life and who in my life really matters too. I have more gratitude for the small things because they’re often the big things in my life now like a letter from a pen pal, going out on my Batec, spending time in my garden, or reading my kindle with a hot drink cosied up in bed in the morning. I don’t think I’d be the person I am today if I hadn’t of become unwell. Yes there are days when I wish I didn’t have FND or a disability because there are so many challenges like being in pain all the time or lack of wheelchair access and the grief I still hold for the life I’ve lost and where I could be if I didn’t develop FND. However I’ve managed to create a new life and I’m passionate about raising awareness and advocating for disability. That’s why I started this blog and I’ve done lots of awareness work which you can see what I’ve done here and I’m also a Storyteller for the disability charity Scope. As well I also really appreciate the support my PAs give to me each day the enable me to live independently and to life my life how I want. I also appreciate all the support my Dad gives me too.

Links

A good resource site for FND is FND Hope

Happy International Wheelchair Day 2026!

My NHS wheelchair

I’m very proud to be part of the wheelchair community. For me I’m an ambulatory wheelchair user, that means that I can stand and mobilise without a wheelchair; when I’m not using my wheelchair I use crutches to help me get around.

However I always use my wheelchair when I go out; sometimes I’ll also use my Batec if I know I’m going to struggle pushing myself. When I had my NHS InvaCare Action 3 wheelchair it was impossible to use inside but my new wheelchair allows me to use it inside. This makes life easier but also much safer as I can’t stand for too long as well I can have a very off-balance gait when walking plus when I stand up I get very dizzy and lightheaded and at times want to faint. So transferring into my wheelchair solves a lot of these problems.

March is a special month for me as last year towards the end of this month I got the delivery of my GTM Mustang wheelchair and the difference it’s made to my life has been incredible especially when I compare it to my previous NHS wheelchair.

My GTM Mustang

For me now my wheelchair means freedom and independence. Some of the customisations make it possible for me to use a manual wheelchair. My chair is very lightweight and I have lightweight Spinergy wheels. The lighter the chair the easier it is to push. I also have CarboLife L push rims with gekko grip which give me a bit of extra pushing power.

I actually like being seen in my wheelchair now and I like being seen as an independent wheelchair user. For example if I’m in a supermarket instead of my PA carrying the basket I’ll have the basket with my shopping in it on my lap thanks to my LapStacker which secures the basket on my lap.

For any wheelchair user I highly recommend getting a LapStacker!

I also love my Batec attachment. It’s a power add-on and since getting it it’s really helped my mental health. Even just getting out around my estate for some fresh air does me wonders. I went out yesterday just for a little ride, I was very glad I wrapped up warm and put my BundleBean on too for added warmth. But just that journey after being in the house for days really helped.

I’ve also done some wheelchair skills training with Freedom Wheelchair Skills. Stuart was a great coach and I learnt a lot and gained more confidence as a wheelchair user. I just need to practice and perfect my ability to do backwards balance (pushing your chair on your back wheels).

My Batec Mini 2

I think I’m very lucky to have my GTM wheelchair and Batec. I’m so grateful for to have them. I’m just taking each day as it comes as maybe in 3 or 5 years my needs might change with my wheelchair and I might need to add something like a SmartDrive to assist me. Who knows.

One of the things I recently highlighted at my local supermarket was the lack of an accessible scan as you shop checkout for wheelchairs. As amazing as my PA is I want to be able to do things for myself rather than rely upon her. We also highlights how the scanners are chosen at random so as a wheelchair user if I was on my own I’d be unable to reach a chosen scanner that was either at the top or at the bottom. The world just definitely isn’t made for wheelchairs but hopefully things are moving forward in the transport industry, in allowing wheelchair users to go on holiday, to access work, entertainment venues, hairdressers, shops, cafés, supermarkets and more.

So, what is International Wheelchair Day all about?

• It was founded in 2008 by Steve Wilkinson
• Today celebrates the freedom and independence wheelchairs bring to the disabled community 
• Today also highlights the need for more provision of wheelchairs and those who don’t have access to one
• Today also highlights the inaccessibility for wheelchair users such as the lack of ramps and lifts as well as more advocacy for wheelchair users 

My journey with anorexia

Eating disorder recovery symbol

* TW: Eating disorders and self harm*

Back when I was a teenager I really struggled with a lot of things. Home was difficult due to my mum’s BPD. School wasn’t great either. I was bullied in both primary and secondary school. I never felt like I fitted in anywhere, especially with my peers. I’d try to change myself to fit in but I felt awkward. I preferred the company of adults like the dinner ladies on duty in the playground or teachers. In primary school I’d much rather spend my break and lunch periods in the classroom tidying the classroom and doing jobs for my teacher. 

The move to secondary school I found really unsettling. This quickly brought on feelings of anxiety and depression; I was already deliberately hurting myself in different ways. I struggled to cope with the change of teachers and classrooms. I also found the playground dynamics difficult too. I’d gone from enjoying playing double Dutch skipping in the playground at primary school to just everyone using the playground to stand around in their cliques in. I struggled even more to try and fit in and to change myself as I moved around groups.

More often than not though I was bullied than being friends with people; if it wasn’t one person or group of people bullying me physically and/or verbally it would be another person or group. 

I took to spending my breaks and lunch periods in either the library or my favourite teacher’s classroom. 

I’d always avoided the canteen from day one as I found it too small for purpose and it was noisy and overwhelming. Not eating meant I could spend my whole lunch period in the library of my music teacher’s classroom. 

My only refuge at secondary school from feeling overwhelmed and anxious was to spend time in SEN unit doing worksheets so I didn’t have to be in the main school building. It saved me the stress and panic and worry of changing classrooms and teachers as well as being away from all the bullies.

Very soon my eating disorder took hold. It quickly went from skipping lunch at school to not wanting to eat at home too. I very soon became a vegetarian as it was something I could cut out of my diet. (I’m still a vegetarian now and always will be but I do it for the animals now.) 

Eating disorders are very manipulative. I remember my dad saying he’ll take me to the GP and I bargained with him that if I eat my packed lunch we won’t go. I made it look like I had so voilà no GP. However I annually saw my paediatrician for my spinal curvature and I got on well with him. I remember telling him how dark I felt and we spoke about my eating. My paediatrician diagnosed clinical depression and anorexia.

Very quickly treatment changed. I had to start seeing a dietitian who had zero clue about eating disorders and she was expecting me to do the impossible. I also had to see my paediatrician twice a week. That just lead to me spiralling even deeper. Eventually in October time I self-harmed by taking a small overdose. This fast tracked me to CAMHS: Child and Adolescent Mental Health Services. I started psychotherapy sessions with the CAMHS therapist that assessed me in hospital; she came to play a key role in my journey. Unfortunately I was in too deep with my eating disorder and depression and a couple of months later I was admitted to my first inpatient unit.

Going into hospital almost saved me in a weird way. I hated inpatient treatment but that first admission got me away from everything that was bothering me school and home.

I spent the next several years in various inpatient units. I restored my weight each time but it didn’t work on me emotionally. I think the problem was the lack of talking therapies. I’d get discharged but I’d quickly relapse and be admitted to another unit. I think what worked for me was in my last unit there was a social worker in that unit and I talked to her about home and basically my mum left and that really helped me. I was able to stay at home and what helped me to recover was my CAMHS therapist. I was in therapy with her for several years and slowly I opened up to her. I honestly think I owe my life to her and I will never forget her.

I relapsed with my anorexia again last year. I think the trigger this time was not feeling in control of my health and care maybe? I actually asked for help this time. I was assessed and then offered outpatient therapy. 

There were times earlier when I struggled with outpatient therapy and did want to consider inpatient treatment again but equally I really wanted to try and stay in my own home especially as I now have my own home. I’m still in outpatient therapy. It’s tough going and it’s often a real struggle but my therapist (who I get on well with thankfully), with has made a lot of suggestions to help me at home.

The therapy I’m doing at the moment is CBT-ED so it’s CBT specifically designed for eating disorders. I find my therapist challenges my thinking a lot or will get me explain something I say. I’ve also been shown a lot of resources some are general information to learn about various aspects of eating disorders then some resources my therapist gave me were aimed at specific things I struggle with as part of my eating disorder. I’ve found the education really helpful partly because I like to know and learn things but also it helps me understand my eating disorder. I really struggle with my body image but that topic isn’t worked upon until my weight is restored, something I’m making slow progress with and struggling with as well. 

Recovery takes time but equally recovery is possible.

Beat

Information and resources

Helpline - telephone, email, 1:1 web chat