Saturday, 15 June 2019

GUEST POST by Jonathan for Carer's Week 2019

5 Important tips I’ve learned from being a Carer

Hi, my name is Jonathan and I’m a husband and carer for my wife who has multiple life-threatening and chronic health conditions.

I was asked to write a blog post for Carers Week, which I’ve never really done before so I wasn’t sure what to write about. However, after thinking about it I decided to write about some tips I’ve learned since becoming a carer that have helped me with my responsibilities and that I hope in some way will be of help to other carers too.

  1. Don’t get confused between being a carer and being you.

This is probably the first big dilemma I had when I started taking care of my wife full-time. When I transitioned from work to caring I struggled to understand who I was because I took on my role as a carer like it was a job, which unfortunately is entirely the wrong way to view it! However, I now understand caring to be helping out a loved one and not a job. I am myself first, husband second and a carer afterwards. Being a carer shouldn’t change who you are or define you as person. If you can view caring in this way then it will actually help you keep balanced in life and be a better carer as a result.

  1. Don’t be afraid to accept support.

When I first started taking care of my wife full time I mistakenly thought I could do everything on my own and didn’t need any help. But my wife thought otherwise and could see that I was eventually getting stressed and struggling and so she decided to get some carers in to help us. I was skeptical at first but soon realised that the help was very useful and it allowed me some much needed breathing space. Now I don’t know what we’d do without the help we get as it means my wife is cared for during part of the day so that I can do other things that I need to do or spend some time for myself, enjoying hobbies, going to the gym or just taking time out to relax. It can be hard to admit that you need support but in my experience you should never be afraid to ask or accept help when you need it.

  1. You have to be organised.

I must admit that I’ve never been the most organised person but if becoming a carer has taught me anything it’s how to be more organised. When you’re caring for someone who depends on you to help them organise appointments, sort medication, provide personal care, manage finances and other things on top of looking after a house then life can get very busy. Suffice to say it took me a while to get myself more organised and into a better routine but now I find life much easier to cope with because I know what is going on and I’m more in control, which then helps me to care for my wife better.

  1. You need to make time for yourself and take breaks.

Now I know that this is easier said than done for a lot of carers as their time is almost always taken up with caring and other related activities. However, making time to care for yourself is important as it will make your relationships stronger and healthier and make sure that you don’t burn out. Finding time for yourself to do things you enjoy though doesn’t mean you love the person you care for any less, it means recognising that you are human and need to take breaks too, it also means that you will have new and interesting things to talk about with the person you care for and others that isn’t just related to care work. Personally, I was only able to take a break from caring when we started having carers come in to care for my wife during the day. It allowed me some time each day to go off and do something for myself, even if it was just to go to a local coffee shop and read a book. Taking a break might be difficult in your circumstances but it is important for your own wellbeing and also that of the person you care for that you find to take a break and refresh so that you can continue caring and not burn yourself out.

  1. Don’t isolate yourself.

Loneliness is a big problem for many carers. In fact, a recent study by Carers UK suggests that carers are 7 times more likely to be lonelier than the general public. It’s a sobering statistic but not really that surprising, especially since I’ve experienced times where I have felt lonely and depressed. It’s so easy when you are wrapped up with caring to feel lonely. Before caring you may have had a social life and spent a lot of time with friends and family, but now unfortunately you’re not able to spend as much time doing those things and your social life can become almost nonexistent. Personally I also found that I wasn’t able to rely on friends and family as much for support because I was worried that they wouldn’t understand my new circumstances, which made me feel even more isolated. 

However it’s not all doom and gloom as there are ways to make sure you don’t get isolated. I found being able to talk to other carers a good start as being able to open up and share with someone who knows what I might be going through is a great way of relieving any pressure and stress that I might have. Also making time for myself to go out and interact with other people, perhaps asking to meet up with a friend for a coffee and have a chat or go and play a sport occasionally with a group of friends really beneficial. It doesn’t have to be lots of activities but just enough to make you feel a part of a social group again.

If you are also a carer then I hope these tips have been of some help to you and have perhaps inspired you to seek the help and support that you need. I also hope that this post will have helped others learn more about what it’s like to be a carer and the challenges it brings. If you’d like to find out more about caring then please check out the charity Carers UK who support all carers in the uk with advice on various topics related to caring and campaign for carers rights.

Kind Regards 

Wednesday, 12 June 2019

The CEA Card - What is it? Reasonable adjustments and Accessible Screenings UK

What is a CEA Card?

The CEA Card is a national scheme developed by the UK Cinema Association.

Having a CEA card enables disabled people going into participating cinemas to have someone to come into the cinema with them for free. This is part of making reasonable adjustments for disabled people under the Equality Act. This person could be anyone, a carer, friend or family member and it means that should the individual need help or support they have someone there to assist them.

The CEA Card scheme is also one way for cinemas to ensure that disabled people are looked after. Though by law all cinemas should carter for the needs of disabled people.

Around 90% of UK cinemas accept CEA Cards. On the CEA Card website there's a search tool to find your nearest participating cinema.

Reasonable Adjustments

If you require  an adjustment when you visit the cinema because of your disability staff should ensure that reasonable adjustments are made whether the individual has a CEA Card or not. 

This may include having autism friendly screening times, having subtitled films, proving audio description, wheelchair access, accessible toilets/Changing Places etc.

Providing reasonable adjustments for disabled people is mandatory by law to all cinemas, not just those that are part of the CEA Card scheme.


To be eligible for a CEA Card you must be over the age of 8 years old and be in receipt of one of the following: 
  • Disability Living Allowance
  • Personal Independence Payments
  • Attendance Allowance
  • Armed Forced Independence Payments
  • Severely Sight Impaired Registration (formerly Registered Blind)
  • Sight Impaired Registration (formerly Partially Sighted)
When you apply you must upload a copy of your entitlement letter of those with Severely Sight Impaired or Sight Impaired applicants you need to upload a photocopy of your registration.

Apply for a CEA Card 

The form is really simple, just just have to fill in some personal details, upload your eligibility information an attach a passport sized picture of yourself.

The card currently costs £6* and is valid for one year and you can use it as much or as little as you wish.

To apply or renew your CEA Card click ⇨ here.

Accessible Screenings UK

Accessible Screening UK is a search tool to find accessible screenings of films in the UK. 

You can search for subtitled films, films with audio description and Autism Friendly Screenings.

*date correct June 2019

Sunday, 9 June 2019

One Second Every Day - June: Week 1

🐢 Saturday 1st June

Had a nice afternoon with my friend. We haven't seen each other for a while as both of us haven't been well. She brought with her some face masks and we put them one and drank tea and had a good catch up. She's the only "real person" friend I have.

🐵 Sunday 2nd June

Not much of an exciting day. Just a usual day, struggling to wake-up and get out of bed; I was able to lounge in my pj's as I had the house to myself and i just laid on the sofa and watched TV.
I put in a Superdrug order for supplies for another pamper session with my friend as she's having an operation next week so she'll be out of action for 6 weeks so when she's feeling better we're going to have another pamper afternoon.

🐸 Monday 3rd June

Not an interesting day. Had my call with Bluebird and then I just rested for the rest of the day and finished of the last part of Section 2 of my college course and submitted that as the deadline is on the 6th.
I have an app to keep my finances in check and it was all going great and then the number went all wrong and I asked my stepmum to help me (as she good with that sort of stuff) and then I just decided to have a clean break and start from scratch (as it was getting all a bit too confusing) but it does mean that my bank account and app out out of sync but I couldn't sync it as both my ESA and PIP (disability allowances) both go into the same account but I like to separate the two so I know what I'm spending on daily living things and what I'm spending on disability things so it's a bit frustrating but at least I know I have some fall back in my bank account. I still like the app and would recommend it; it's called 'Pocket Expense'.

🐳 Tuesday 4th June

Woke up early this morning in pain so I decided to do some letter writing on my laptop to distract myself. I'm almost done with working my way through the stack of replies I had. I've now just got one friend to rely to.
I had a day of extended pj wearing and didn't get dressed until around 1pm. I put on some make up just to brighten myself up.
I had my ½ hour call with Bluebird and my carer braided my hair and then we took a trip to the Post Office.
I've just spent the rest of the day resting as I'm at UCLH tomorrow. Thankfully its not a stupid o'clock pick up time.
This evening I'm just planning on having a bath, getting my bag ready, ensuring things are on charge and having an early night.

🐙 Wednesday 5th June

What a day! (writing this Thursday). Thankfully it wasn't an stupid o'clock early start. Patient transport arrived around 8.30pm. Bit of a panic as they was early and I wasn't quite ready, thankfully I wasn't in the middle of doing my makeup! I did forget my phone so we had to head back but luckily we'd only just got into the village when I realised and we wasn't on the motorway.
We had our usual pitstop at Peterborough services of the loo and a coffee. I watched a Panorama documentary but i was struggling to concentrate and I did some Instagram browsing and starting listening to a new audiobook.
When we got into London I like looking out the window.
Parked up at UCLH and I'm starting to know my way around there now. We found radiology easily. When we got to the desk and I handed them my appointment letter I got told my appointment had be canceled! Seriously?! I was not impressed, especially as a) we'd travelled or 5 ½ hrs and b) I'd received a text reminder. I asked if someone else could do the tests, or even if one of the tests could go ahead so the receptionist went off for a while and came back and it was a no-go. 
Quick nip to the loo and then I wanted to head to the PALS office but when we got there it was closed on Wednesdays. We then went the café/restaurant and had something to eat and just a rest from being in the ambulance.
After a while the fire alarm went off (and it wasn't a drill) the noise, flashing alarms and lots of people exiting starting flaring up my seizures so we scooted back to the ambulance and got ready to set off.
I had flaring migraine and my pain was flaring so I took some pain relief and settled down with my eyes closed listening to my audiobook.
Had another stop at Peterborough services for the loo and I fancied a sandwich but I was doubtful that I'd find one, but I did! We went to M&S and had a look and rather than going on a hunt for a non-existent sandwich we asked a member of staff and hey presto they did gluten free sandwiches and they had a veggie option (egg mayo and watercress) and it was lovely. I didn't feel like a coffee, and I like the fruit coolers in Costa but I didn't fancy a cold drink (plus Watchdog did an article on the 'swab mob' on ice in cafés and it's kinda made me a bit wary).
Home finally and into pj's and I took some more pain relief, anti-sickness and migraine meds. I settled down and watched some TV for a bit then headed to bed.

🐥 Thursday 6th June

Woke up early in pain. This seems to be a reoccurring problem at the moment. I then struggled to get out of bed.
I had Bluebird as usual then I just laid and watched TV and I wiped out from yesterday. My friend popped round for a quick chat and cuppa.
I'm not just sat watching TV. I hope to start on Part C of my distance learning course this evening before I settle down.

🐹 Friday 7th June

Had an appointment at Orchard Barn today. I had my last session of acupuncture and I also treated myself to a 'Nourishing Hand Treatment' and I had my nails shaped and cuticles done, I also had my hands soaked in warm oil and had an exfoliating scrub and hand massage as well as a foot massage. It was much needed! I've felt so on edge lately it was nice to chill out and have a pamper and to have something different too, plus it's helped with the muscle spasms and tension in my hands.
The rest of the day has been zonked out either on the sofa or in my bedroom.

🐴 Saturday 8th June

Had the usual woken up early with pain, this time neuropathic pain which my foot feeling like it was on fire. Normally cold just makes things worse but when I'm having this particular symptom an ice pack is the only thing that helps, esp if it can mean I can avoid taking medication.
As usual I spent he day 'sofa-bound'. I got some college work done, watched some TV, blog/laptop stuff and of course resting and napping.
Feeling snuffly and flu-like.

🐠 Sunday 9th June

Struggled to get out of bed today. It took longer than usual; about an hour and a half.
Still feeling snuffly and flu-like and I've got a headache so I'm just trying to drink extra fluids and just curling up on the sofa. I've done some laptop stuff but my brain feeling like it's going in slow motion and it's full of treacle.
Spent as usual the afternoon 'sofa-bound'.
Had an autonomic seizure after tea; a mixture of POTS and FND.
Still feeling post-ictal and I've been trying to organise my medical diary as I've not been keeping it updated and instead I've just been making notes on my health app. I'm too tired tonight but next week I can start bringing my warrior beads up-to-date.

Video description:

  • Monday: putting a slice of cucumber onto my sandwich
  • Tuesday: water filling the bath and squirting in bubble bath
  • Wednesday: view out the window of houses and the street passing by
  • Thursday: my step-mum spraying the window with the hose pipe
  • Friday: highlighting a line of text in yellow
  • Saturday: time-lapse video of my kettle filling up my cup
  • Sunday: Sliding open Sunday's tablet box

Monday, 3 June 2019

Accessibility Guides - Planning a trip out?

If you have a disability or chronic illness like myself I've sure your care of how difficult planning trips out can be. You can't just turn up at places; instead you have to do your research and often call up the place your visit to ask your accessibility needs and what accommodations their are for your needs. Things like 'is there a Changing Place?', 'do you have info in audio or large print?', 'is there a hearing loop?', 'is there an audio announcement?', 'are their lifts or ramps?', 'do you have wheelchair or mobility scooters to hire?' this list goes on and on!

What's so difficult for organisations is that access needs are so varied including people who have mobility needs, are D/deaf or hard of hearing, visually impaired etc and within that each person's access needs are unique to them so it's difficult for organisations to cover all accessibility needs so often they only give a brief overview.

Thankfully there are some really good organisations that offer accessibility information. It's a bit like Trip Advisor, except for people with disabilities and access needs.

Euan's Guide

"Euan's Guide makes it easier for disabled people to find great places to go. 
The charity was founded in 2013 by Euan MacDonald MBE (who has Motor Nerone Disease) and his sister Kiki. 
As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. 
Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond. 
Euan's Guide was launched by Euan and his sister Kiki as a place for disabled people and their family and friends to share their knowledge of accessible places to go."

I myself use Euan's Guide and write and submit reviews of places for them on the occasions I do go out. IWhen you write a review it asks what you're access needs are e.g. wheelchair user, mobility aids, speech impairment, assistance dog, hearing aid/cochlear implant etc. You then give an overall description, and then you write a review of transport & parking, access (e.g. was their a ramp/lift, hearing loop system, places to sit etc), toilet facilities, staff, anything else and you can also attach pictures, such as the seating area, the accessible loo/Changing place, accessible changing room, outside/inside access, Blue Bade parking etc.
Red Cord Card
As well as access reviews Euan's Guide also has a Red Cord campaign. 

They give out free #RedCordCards which say: "This red emergency cord must hang freely all the way to the floor. If it does not, it may prevent a disabled person from asking for help". 

Taking action in Matalan
The Red Cord Card scheme aims to bring awareness that emergency red cords in accessible toilets, accessible changing rooms, accessible fitting rooms and Changing Places need to hang freely. I carry around a few in my bag and leave them on emergency red cords and when I see one that been tied up I, if possible untie it and inform staff and also take a picture of the tied up cord and tweet it. This seems to rather effective. I recently got Matalan to sort out their emergency red cord in the accessible changing room.

If you live in the UK can order a free pack of Red Cord Cards from Euan's Guide ⇨ here

You can follow Euan's Guide on Twitter ⇨ here and tweet pictures of emergency red cords and cars with the hashtag #RedCordCard and #LetItDangle (see Gem's video below ⇩)


"AccessAble is here to take the chance out of going out. To give you the accessibility information you need to work out if a place is going to be accessible for you. We've surveyed 10,000s of venues across the UK and Ireland, including shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more. Use AccessAble to find wheelchair friendly venues or check out disabled access and facilities."

AccessAble have reviewed all sorts of places and they provide easy and accessible information on the facilities available (with some really cool symbols to represent all different kinds of needs from facilities for people with mobility needs, Blue Badge parking spaces, accessible accommodation, sign language, safe or quiet places, large print, braille, audio format, assistance dogs and more).

All you need to do is put in the location of where you're visiting and it will show up the places nearby that have been reviewed.

Changing Places 

Changing Places symbol
Changing Places are specially adapted toilet facilities as well as having standard toilets with grab rails and an emergency red cord like in you average accessible toilets Changing Places are a bigger space and also have changing tables and hoist facilities; some even have shower facilities.

The Changing Places Consortium was launched in 2006 on behalf of the over 250,00 children and adults who cannot use standard accessible toilets. 
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. Without changing places many people are forced to have to lay on a toilet floor. Changing places are also a bigger spaces to transfer onto the toilet, to fit at least two carers into the room and have the clinical waste bin, screens for privacy and plenty of grab rails. Some Changing Places also offer hight adjustable sinks and shower facilities.

The Changing Places website has a map of where you can find your nearest Changing Place, such as at hospitals, motorway services, tourist attractions and concert venues.

As well as the map there's also a feature where you can plan your journey and it will show you where all the registered Changing Places are located along your route.

Example of a Changing Places facility

Sunday, 2 June 2019

One Second Every Day - May: Week 5

Monday 27th May

Pretty mundane day. Just tried to rest to recover from yesterday. This evening my Auntie and Uncle came to stop over from the night as they've been down south so they're staying the night to break up the journey. It's nice seeing family.

Tuesday 28th May

At lunch time Dad and I finished off the film we started to watch the other night.
I then got myself ready to leave the house as I had an acupuncture session. I still get anxious about my seizures but Mel tries to relax me as possible and it is quite relaxing and I am noting that it is helping in some ways, like last week my shoulders where so tight and this week they've really eased off.
I came home an I was exhausted so I had a lay down for an hour and then Dad and I had our tea and I just watched TV for the rest of the evening then went to bed.

Wednesday 29th May

I managed to have a little bath and then I had a rest. I've done my makeup today as I haven't put on any for a while and it always makes me feel brighter.
My advocate called me to remind me that she was coming at 2pm.
She came and we had a chat. I feel so lucky yo have her supporting me as before she came along I felt so voiceless an now I have someone backing me up and getting my care moving rather than just stagnantly not going anywhere and trying to find ways of supporting me until I get my bed for neuro rehab in Leeds.
This evening my step-sister came round for tea then I had a rest and we went to the cinema to see 'The Secret Life of Pets 2' which was really good, plus it was nice to get out of the house.

Thursday 30th May

Enjoying having a day of nothing.
Pain woke me up early so I made myself a coffee and sat up in bed with my laptop.
I'm trying to get in a routine of washing my face every day. I've also put some makeup on again even though I'm going nowhere but it makes me feel brighter. 
I spent some time putting my birthday wish list together and watching TV and laptop stuff as well as trying to sort of holiday insurance which is complicated as I'm waiting to go to neuro rehab Leeds so I need to call the secretary for the ward tomorrow to see if there is a possible chance that I might get a bed when my holiday is booked for in November.

Friday 31st May

Did some more sorting of holiday insurance. As I'm waiting for treatment in Leeds many insurance companies won't cover me for cancellation should I get a bed around the time of my holiday in Leeds but I phoned Leeds, I still have a way to go on the waiting list (they only have 4 local beds and 4 beds for the rest of the UK) so it looks like I'll be waiting a while which is frustrating as I'm so desperate for their support and getting some sort of treatment and management of my symptoms. But, should I get a bed around the start time of my holiday (end of November) they can delay it until after my holiday and being at the bottom of the waiting list. Still at least I'm not on the waiting list and I have the funding. I just feel frustrated that my GP didn't do the referral sooner (it took him 14 months to get round to doing it and I'd probably still been waiting if I hadn't;t of gotten and advocate). So, I can go for the cheaper holiday insurance and save over £120, I just risk not getting my money back if I have to cancel my holiday if I go to Leeds sooner then November time.
Had an appointment with orthotics this afternoon. The person I see is really clued up on hypermobility disorders which is rare for where I live. My knee brace isn't quite doing the job so he's going to send it off for modification. If that doesn't work I'll need a bulkier brace so we'll see if the modifications help. My current brace also isn't really doing much for my patella dislocation so he's changed one of the velcro fastenings to see if that makes any difference or not and to drop it off with a not to see if that's helped or not and also to drop it off so it can be modified. He'd seen another patient earlier that day who's having the same issues as me so we're both going to have the same modifications to try and prevent hyperextension (bending backwards) of the knee. If not then I'll need a different know of knee brace. Only issue with the bulkier one is if I need one for each knee they might catch on each other. Currently i just wear a brace on my right knee but my left is starting to play up.
I'm also getting better insoles for my feet. When he assessed my feet (thankfully I've lost a lot of sensation in them so I can now tolerate them being touched!) he noted that there was significant weakness and power in my feet. So new insoles and if they don't help he'll make me some custom ones.
Home after a bit of an issue with patient transport. They blamed me when I felt it was an admin error and the lady had a bit of a moan at me which didn't;t help my mood and I've already not been feeling 100% so I sent off an email to their 'Patient Experience Team'.

Video description

  • Monday: Taking my medication tray out of a pharmacy paper bag
  • Tuesday: Rinsing a medicine cup under a running tap
  • Wednesday: Photo of cinema tickets for 'Secret Life o Pets 2'
  • Thursday: Scrambling up some egg in a glass jug with a fork
  • Friday: Clicking a task completed on my laptop's 'to do' list

Friday, 31 May 2019

A post to end May

So May has been a busy month for M.E., mental health and EDS/HSD awareness and on my blog I've had lots of posts and guests posts covering all of the awareness events. May is also especially important as I have been especially important to me as I am affected by all three.

Guest Posts

It's been great to have so many great and varied guest bloggers write for me this month sharing their story to help raise awareness and understanding.

A big thank you to everyone who did a guest blog for me.

Awareness Raising

I've also shared my own experiences in blog posts as well as working with different charities. I made a video 'M.E. and Me' for Action for M.E. and my story also featured in the special edition of The ME Show entitled 'The Real ME'.

It's been great to get back into my campaigning work and also to use my experiences to help raise awareness and understanding. I'll defiantly be looking out for opportunities for next year, especially to raise more awareness of M.E. and HSD which are less understood.


Rather than doing a traditional blog post it was interesting to do the #meandmyME challenge as a way of sharing about my life with M.E. and it covered different topics and it probably enabled me to share more than in a blog post, plus it gave me new ideas and topics that I wouldn't have thought of to write about. It's was by @spoonie_village. It was one they did last year but I didn't find out out about it until after May and I've just found one that they ran this year so I'm thinking of doing that one for next year as it was interesting and different to do. They did run it as an Instagram daily photo challenge but I chose to do it as a blog post instead. 

Just a brief explanation... 

Myalgic Encephalopathy

M.E. is a multi-systemic (meaning it affects the whole body) neuro-immune disorder. It has many different symptoms, some are constant and some are episodic. and the severity varies from person-to-person. M.E. is much much more than simply 'feeling tired'.
Each Sunday I've published a post #meandmyME where I've spoken about different aspects of my life with M.E. It's a really difficult illness to live with as I can't my days or even hour-to-hour. I constantly feel like I have the flu and sleep doesn't make the fatigue better and you often feel like your limbs have been turned to lead and you can't think straight along with many other symptoms.

Mental Health

I've struggled with my mental health more of my life than I haven't. It began with depression and then I developed Anorexia and spent several years in hospital and I now also contend with Complex-PTSD.

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

HSD which again is pretty complex. HSD is a hereditary connective tissue disease. HSD is also multi-systemic can is caused by faulty collagen which is basically like the glue of the body holding all the organs and joints together. So because it's faulty it causes organs to become too stretchy and not work as well and for joints to become lax so they more easily sublux and dislocate. It affects the skins so it stretcher and injures more easily - I can't remember the last time my skin was free from bruises, cuts, scraps, scars and stretch marks. Veins are also affected as they're stretchier too so it's hard to get IV access and often I feel like a human pin cushion.

GUEST POST by Emma for EDS/HSD Awareness Month

Hi, I’m Emma,

I just finished junior year of high school, and most would say I live a relatively “perfect” life as viewed from the outside. However, I struggle on a daily basis with several invisible illnesses. I have a disorder called Hypermobility Spectrum Disorder (HSD), which is a connective tissue disorder caused by defective collagen production. It’s very closely related with Ehlers-Danlos Syndrome, specifically the hypermobile type. This condition has been the root of my other conditions as well as issues that remain undiagnosed. 

For me, HSD has caused: Dysautonomia (dysfunction of the autonomic nervous system causing heart problems, body temperature problems, blood pressure problems and more), Severe Pelvic Floor Dysfunction (the improper use of the Pelvic Floor Muscles), Gastrointestinal Dysmotility (the slowed movement of food and other materials through the GI tract), Vocal Cord Dysfunction and Asthma. 

The hardest part of having HSD is often feeling overlooked, because you don’t have an EDS diagnosis and many clinicians aren’t aware of the spectrum of hypermobility. Personally, I experience symptoms everyday, most prevalently joint dislocations and Dysautonomia symptoms. 

My medical conditions often dominate my life. My day is consumed by taking several medications and vitamin supplements as well as a rigorous eating and drinking schedule to try to increase my weight. I often have several appointments a week, usually for physical therapy. 

Though all of this can be overwhelming, it’s taught me a lot. It’s taught me the value of a positive attitude, and most importantly it’s taught me to be grateful and cherish everything I have. Of course, sometimes it’s really hard. There’s been some really dark times during hospitalizations and tube feedings especially, but I made it through them. Now my goal is to slowly strengthen my joints and get myself back to living a normal life. In the meantime, I’m going to continue advocating for those with invisible illnesses and enjoying life as much as I can.

#meandmyME Week 5

Monday 27th May // Day 27: Rest

Most of my days are spend resting in some way or another and despite resting I'm still tired. I refer to this as 'sofa bound' - I probably spend about 95% of my day on the sofa or my bed, though I try to leave my bed for longer rests, napping and sleeping (but sometimes I need to spend all day on my bed).
Rest is really important. It helps me get through the day and to be able to function (just about) the next day. 
After every task I rest. Pacing plays a huge part in this.
If I have something big the next day or two, such as needing to go out with my carers to run errands, appointments etc I have to rest otherwise I'd crash and the PEM will be even worse.
Basically resting is really important when you have M.E. or any illness that involves chronic fatigue.

Tuesday 28th May // Day 28: inVISIBLY disABILED

The vast majority of the time I am invisibly disabled when it comes to my M.E. You may see me sitting or laid down but you don't see the pain or me fighting to stay awake or the chronic migraines and all the other symptoms that I'm dealing with at that moment in time. 
I wear tinted lenses (which people often mistake for me wearing sunglasses), due to photosensitivity/photophobia and migraines, but you don't see why I'm wearing them.
When I'm on my laptop blogging you don't see all the concentration and brain fog and that when you read a post you don't see that it's taken me days or a week to write. (I started this #meandmyME last year and I've been adding to it bit-by-bit).
If I'm out and about you'll see me with my crutch holding onto someone's arm, or more often now in my wheelchair; then my invisibleness becomes more visible, but that's only the tip of the iceberg. Even in my wheelchair you can't see all the invisible M.E. symptoms (or the other illnesses I have). 
It can be had having inVISIBLY disABLED as you feel like you have to constantly make the invisibleness visible such as when I first got ill trying to get a seat in the priory seating or assistance at the train station, (I no no longer use public transport), but I've now learnt that I don't have to do that. If people don't understand or can't "see" my M.E. (or other illnesses) then that's their problem and not mine; I don't have to justify myself to anyone and neither should anyone else with an invisible disability. 

Wednesday 29th May // Day 29: M.E. hasn't stopped me

M.E. hasn't taken away my hope of going back to University, and one day becoming a Child Psychotherapist, it's just that my life is on hold whilst I get well enough.
It hasn't stopped me from studying, I've done an online art foundation course and I've been doing home distance learning courses.
I've had to adjust such as I can't do as much active volunteer or campaign work but I can do a little online or over the phone.
Even though I can't get out an meet people in person I still "meet" people and have friendships through letters.

Thursday 30th May // Day 30: Quotes/Words I live by

'Carpe Diem' - seize the day, which for me is making the most of the day and achieving as much as possible, whether it be read a module of my distance learning work, or just enjoying my carer braiding my hair.

The Harry Potter books are filled with inspirational quotes; a lot of which come from Albus Dumbledore.
"Happiness can be found in the darkest of times, only if one remembers to turn on the light"
There's also an art film called 'Impossible Shoes' and I love all of the lines in that, but there's one quote from that that I like especailly... 
"There are things that are possible
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
Imagination is another name for absolute power"

Friday 31st May // Day 31: If I could tell you one thing about M.E....

That we're all a piece of cake and only on portion of that cake is our disability/chronic illness (M.E. in this case) but there's so much more to use than our disability/illness and it's about finding yourself among that even when you feel like you're M.E. has taken over you.

Thursday, 30 May 2019

GUEST POST by Lucy* for EDS/HSD Awareness Month

Over the last 2 years I would say that my health has deteriorated. One of my biggest fears is that this will continue over time and I will get to the point where I end up having arthiritis in my older years. I fear that one day I will loose my mobility completely to a point I need a wheelchair or a walking aid full time. I know people will always say 'oh it won’t get to that', but in all honesty nobody actually does know. Only recently I genuinely could not move any part of my body because I walked for 1 hour the day prior. Obviously I hope it doesn’t come to that but it does play on my mind. Especially after seeing and speaking to others who have similar Hypermobility experiences who are in wheelchairs etc it is so hard to not think otherwise.
Another fear I have is missing a bigger illness. I experience so many random pains and aches everyday. I get new pains all the time, looking back a few years ago I never had fluid in my knees, consistent lumbar back pain, swollen hips but I do now. What if a bigger illness comes about but I do not notice it because I think its part of my hypermobility?
Lastly my other fear is going through pregnancy. I have heard so many bad experiences. With back pain like this imagine what it will be like through pregnancy when it is supposed to be bad. Imagine what my already swollen feet and swollen knees will be like when you are pregnant and those symptoms are supposed to happen. What would I do without painkillers, I think I will probably cry everyday. How can something that is supposed to be so special and exciting be so scary and nerve-wrecking.
From, Lucy* aka @hypermobility_ 

May Birchbox

This month's Birchbox was called 'Spread Your Wings'.
Inside was...

Lord & Berry

Ultimate Lip Liner in Vintage Rose

This is a water resistant long-wearing lip liner with a creamy formula and can also be used as a lipstick.

Through Birchbox I've come to love this brand. The lip liner goes on so smoothly and is really easy to apply and is a lovely shade.

It's only been since I've been getting Birchbox's that I've expanded on what makeup I use. Before I just stick to lipgloss but now I have such a range of lipsticks, crayons, lip inks etc in all sorts of shades to go with different outfits and makeup looks.

Full size
RRP £13


Sakura Hand Balm

Like with Lord & Berry since getting Birchbox's this is another brand I've come to love and I've even treated myself to a few of their products as they just smell amazing.
This is a new scent of the Rituals range and like their other products it smells lovely and it makes my hands feel amazing too.

Full size
RRP £9.90

Beautaniq Beauty

Nourishing Mascara

This mascara thickens, lengthens and brings volume to lashes and nourishes them all at the same time.

I've already got another mascara on the go at the moment so i've put this aside for when I need it.

Sample size
RRP £12


Face Sunscreen SPF 50

Not only is this a sunscreen it's also packed with anti-oxidants and Vitamin E to hydrate and protect your skin. It's got a lightweight formula to leave skin feeling velvety soft.

I've not used this product yet but hopefully when the weather gets nicer I can pop it on and get out in the garden and enjoy the sun and summer and hopefully get a bit of a tan whilst protecting my skin.

Sample size
RRP £17.50

Philip Kingsley


This is a pre-shampoo treatment which adds elasticity, hydration and shine to hair and tames it to be more manageable and reduces breakages.

Using it it really has strengthened my hair and made it shinier and more healthy looking.

Only downsize was even though this was full size I probably will only get about 4/5 washes out of it when you have long and thick hair.

Full size
RRP £9.50

Wednesday, 29 May 2019

One Second Every Day - May: Week 4

Monday 20th May

Had my Monday Bluebird visit. My carer's just been on holiday so we laughed at how pale my skin was compared to her tanned arm.
I got carried away on my laptop and forgot my meds review appointment at 3pm, though my care co did feel at fault for not reminding me, plus I'd forgotten to set my usual reminder alarms. Hopefully I won't be waiting too long for a new appointment.
Dad's away this week on a school residential trip.
This evening Mandy and I wanted a film 'Invasion of the Body Snatchers'.

Tuesday 21st May

Mix-up with Bluebird - I was meant to have my usual ½ hr call but there was some sort of error with he rota so it's been moved to tomorrow.
This afternoon I had an acupuncture session at Orchard Barn.
The rest of the day was spent just resting on the sofa.

Wednesday 22nd May

Had a ½ hour call with Bluebird. My carer brought me an early birthday present which was an indoor flower plant in a flamingo shaped pot which I love. This brings my plant collection to 14!
I did my makeup and my friend Abi called me for a quick chat.
It was then time to leave the house to get myself to the GP practise. I meant my advocate there as it's my new GP and I just wanted her support.
My new GP seems okay; better than my old GP. He was honest with me which I like and he wasn't dismissive and he seemed clued up and explained things well and he seemed friendly and supportive and he's going to keep in regular touch with me which my old GP never did and even though local support services don't exist which we both agreed upon and how I sort of fall between the gaps as I'm not end-of-life but I'm not temporarily ill and then there's noting for the illness that I have, but he's going to have a think and a search to see if there is anything for me.
After my advocate and I had a chat about what I want her to say on my behalf at the professionals only meeting the Complex Care Team is having about me. (Not really following person-centred care by not inviting me along.)
I'm now just resting watching TV and doing some colouring.
This evening Mandy and I went to a friends of Dad and Mandy's from church to watch a film as we didn't;t have a blue-ray player.
I'm now exhausted and ready for bed.

Thursday 23rd May

Had Bluebird this afternoon. First off was an ECG with the nurse at the GP practice and then home. I tried out a new facemark which I got in my Birchbox a few months back. We had a giggle at how I looked but my skin felt lovely. It was nice to have a little DIY facial.
I had a prolonged seizure and my carer ended up having to call out the paramedics. I managed to avoid a trip to hospital. My Uncle came over and sat with me for a few hours and then he left me to sleep on the sofa.
My body is still in a lot of pain, especially my hip. I hurt my hip at the weekend during a fall (queue another paramedic crew) and the seizures just flared that up.
Dad's been away this week on a school residential holiday (he's a teacher) he called me at bedtime and it was nice to talk to him and be honest with how I'm feeling and how I'm struggling.
To be honest my mood has been really low this evening and I ended up calling the crisis team. I'm just hoping my mind can switch off so I can get some sleep.

Friday 24th May

My hip is still painful today. So far I've spent a bit of time on my laptop and done some college work and I washed my face and used some of my things out of my Birchbox's. I'm trying to get into the habit of asking my face each day.
I've also spoken to my care co-ordinator and my advocate as there was a 'professionals only' meeting about me today wit the Complex Care Team (bit miffed I wasn't invited).
I'm now just taking a break from college work to do some mail.
Just about to head to bed. I've spent today going between college work and letter writing as well as resting. I've hardly watched any TV, and I saved some energy to tidy my room (though I still have a pile of laundry to put away). It feeling a productive day despite the pain, but to be honest it's been a good distraction.

Saturday 25th May

Not  much of an interesting day. Flop got cleaned out and he had a good munch on the grass. I'm really into audiobooks at the moment and it's nice to plug my headphones in and close my eyes and zone out. I also wrote some PostCrossing postcards.
Mandy was working this evening so it was just Dad and I so we watched a film, well, we got halfway through and hen at 9pm we started to get tired so I got myself up to bed.

Sunday 26th May

Having a bad M.E. day though not sure what's brought it on. 
To get some darkness I went and laid on my bed and had a deep rest. I put my headphones and an eye mask on and listed to a book for quite some time. I then thought after several hours that I'd try and make my way downstairs and onto the sofa, but 5 minutes into my programme Dad and Mandy wanted the TV. I tried laying on the sunroom floor (I could't handle being upright for too long) plus it was too bright so I went to lay on the sofa (well, it's a sofa bed and its been converted into a sort of second lounge come laundry room) in the back bedroom. I was going to watch Chicago Med but when I put the TV on the first Harry Potter film was one so I dozed and watched that.
I've spent the rest of the evening watching TV apart from eating. I came to bed and listened to a new audiobook. I keep meaning to find some new podcasts.

Video Description

  • Monday: photograph of my pale arm next to my carer's tanned arm
  • Tuesday: opening up a section of my alarmed pill box
  • Wednesday: view of my GP practise waiting area. A large atrium area.
  • Thursday: Colouring in a postcard picture of a cats with a dark brown pen.
  • Friday: Spooning coffee into a pink cup
  • Saturday: View of the garden from where I was sat and Flop on the lawn munching grass.
  • Sunday: Turning on my headphones and lights coming on.

GUEST POST by Jonathan for Carer's Week 2019

5 Important tips I’ve learned from being a Carer Hi, my name is Jonathan and I’m a husband and carer for my wife who has multiple life...