Monday 21 December 2015

Keeping up with Christmas and a chronic illness



Christmas is exhausting. There's the lengthy build up that seems to get longer every year. The present buying, the decorating, the arrangements, the logistics, the invites, the festivities and the expectation to do everything and be everywhere. And this is just Christmas in general.

Doing all of this when you're battling chronic illness can feel like climbing a festive mountain where the fairy lights aren't quite so twinkly and the spirit isn't quite so cheerful. When you enter the festive period already exhausted and burnt out, it's hard to come up with that second burst of energy. That last, bright spark you need to bring the year to a close in an explosion of seasonal joy can feel out of reach.

Many chronic illnesses see their sufferers having to deal with fatigue. There are days when even showering is too much of an ask, let alone shopping, wrapping, visiting, cooking and going for drinks. There's also the fact you need to manage expectations. It's sad but at Christmas time and during other big events, managing a chronic illness becomes like managing a business. You need to be able to tell people what you can do, what outputs are realistic and how much work you can contribute. Yet even letting people know all of this in advance can't shake off the feeling of being a general let down.

Many families and friendship groups will rally around their beloved chronic illness warriors this Christmas, They'll make them feel at ease, help them out with their tasks, organise their socialising and help them do as much as possible- but not everyone has that support network.

If you're feeling isolated and alone during Christmas because your chronic illness doesn't allow you to live out the full festive pantomime- please remember a few things.

1) Christmas isn't everything and while it will return year after year, laying out exactly what you can handle rather than making yourself feel worse is a good foundation to lay. People are inherently good and you might be surprised by what a short, heartfelt explanation of your feelings to someone might achieve.

2) If you are stuck in a rut with family and friends not understanding that Christmas is a big deal in terms of symptoms for you, then maybe it is time to change that. What can you do to make them understand? If you don't feel able to face up to dealing with it now, can you spend next year trying to better educate those around you? It might not feel like it when you are feeling really down in the dumps but it's likely people do want to help and it's also likely they'd feel pretty bad if they knew what their expectations and judgement was doing to your state of mind.

3) Have you turned to a network of people who can understand? There are so many online and social networks now dedicated to not only chronic illness but even certain illnesses and some symptoms. These are fantastic, often very supportive and helpful groups who welcome in new faces, even if you are online and largely anonymous. Sometimes all it takes to lift spirits is to connect with someone who knows how you feel and can share the burden.

Christmas is supposed to be a time of coming together and appreciating loved ones and it would be amazing if those who have to deal with a chronic illness day in, day out, could experience this to the full. There is much more to be done in the chronic illness world to bring a better understanding and level of edcuation to the wider population and this is very difficult. There are so many chronic illnesses that have different and very far reaching consequences, but for those who know what it's like to feel ill more than they ever feel well, here's hoping that each Christmas can become easier and more loving.

Tuesday 6 October 2015

Having a chronic illness and being a student- some tips to help you settle in to uni life



So you've just started university. Freshers is over and you're now settling into lectures, meeting endless new people, and getting used to the new transition in your life. Uni can be hard on people. It's a lot to adapt to and a lot to get used to. There's the pressures around drinking and going out, the new stresses of handling finances and trying to find your place in a sea of new friends.

All of this on top of having a chronic illness to handle can probably feel like too much. Uni might be, for a lot of students, a time of going out, burning the candle at both ends, but also a time of little structure, meaning sleep patterns are all over the place and a routine is almost non-existent.

There are ways of working around this to help you feel more able to have a regular experience as a student, but to also care for yourself properly at the same time. Being a student can be an amazing, exhilarating time and getting the most out of it can be very positive for those of us with chronic health problems.

First of all, even though this sounds like something you're likely to stick to for three days before getting bored- make yourself a sleep schedule. I'm not talking for the night, because I've been to uni and I know nights out and staying up til morning are just part of the package. I mean naps, mornings where you can sleep longer, evenings where you can get a couple of hours before you begin socialising. Just sit down with your timetable and see what you can get out of it. Making the time for naps mean you won't feel like you're just falling asleep when you shouldn't be, or leave you feeling guilty about not getting on with other things. If it's officially nap time, it's nap time!

Tell your friends. Don't try and weather the storm by saying nothing and having people ask you sideways questions about you pulling out of events, needing to stay home and rest or just needing a bit of help with everyday tasks. Bring it up, explain it as much or as little as you want, but at least if you let them know, they are aware there is a problem. Good friends won't judge you on your ability, so there's also a scope for making sure you are settling into the right crowd.

Alert the uni. You may not have a condition that requires adaptations to living space or assistance with classes and getting about, but you never know what they might have to offer you. These aren't just places you go to for taking exams, learning to cook more than pasta and hopefully getting a degree at the end. Universities try and create a life for you, and it's worth looking into their occupational health services and speaking to someone about support. You can often have access to counsellors, which for a lot of people struggling to adapt to this new world you've landed in, could be just what you need.

This might sound a bit out there and like something you wouldn't even want to consider, but is there a society at your campus for people with chronic health conditions? They exist. I've researched it and places have them, if they aren't long standing. If you are the sort of person who might be inclined to set something up, please do. You could be the helping hand a lot of others who are struggling need to start enjoying their life. Meeting like-minded people who can relate to your health, chronic pain and spoonie struggles could make all the difference to your student experience.

I've had a few requests about writing student posts, and hopefully more will follow that will prove helpful, but feel free to request anything in the comments! Good luck students. I envy you, uni really can be the best time of your life.

Wednesday 12 August 2015

What uses up your spoons the most?



This is something that for me, has only really become a problem in the last year. It hasn’t been a struggle I have dealt with since my symptoms began, like a lot of other chronic health suffers have, and I am grateful for that at least. I am more tired now than ever, but of course I am, because I now have a demanding job, work hard, have a bustling social life, a relationship and the responsibilities that come with being an adult. Add the chronic health issues into this and it is an exhausting bundle of things.

Living with chronic pain and dealing with an abundance of symptoms every day is incredible, and people who do it, no matter what the parameters of their doing it are, should be rewarded endless praise and support. Not that they need it though, spoonies know they have to live their life, we don’t ask for a medal on a daily basis, we just get on with it.

*Just in case anyone reading is this unaware (like I was until about a year ago) spoonie is a term used to describe people with chronic illness. The idea behind it being that we have a certain number of spoons each day, and these get taken up by various activities until they run out. Once they do run out, essentially the person has little left in the way of energy and tolerance.*
So this is, for me, and I would be interested to hear what others find, the list of things that use the most spoons.

-           Showering
-          Fitting in exercise
-          Commuting home from work
-          Cooking dinner
-          Going out after work
-          Chores (especially hovering, washing and changing bed sheets)
-          Engaging in long conversations, particularly those at work
-          Drying hair
-          Reading (weird, but it exhausts me!)
-          Getting ready for a day/night (hair, clothes, make up etc)
-          Shopping (food or clothes)

My list is getting longer and sometimes I sub things in and out. Showering seems to take up so much energy and the thought of it just makes me want to bury myself in my duvet. I know it is a very popular one among those who are trying to preserve spoons, and to the outside world probably sounds bizarre.

What uses up most of your spoons? 

Tuesday 7 July 2015

8 signs you are living the chronic life





Being chronically ill, as I have written so many times on this blog, is a way of life. What it isn't though, is your whole life. I think most people who suffer with such conditions know that there is a lot of importance in making sure you don't let health problems consume you. I try to make sure mine don't but taking a light hearted approach where possible.

Don't get me wrong though, there are still days I want to scream. But anyway, here's something a bit light hearted to go with the chronic life hashtag I've been enjoying keeping tabs on lately.

1) You often find yourself wondering if you are on fire because yet again, you've slapped on too much Deep Heat and certain parts of your body feel like naked flames.

2) You can often be found blankly staring at people mid-conversation and struggling to remember where/who you are due to chronic fatigue. Great if you want certain people to not speak to you again, not so ideal if you're in a board meeting have 12 people staring at you.

3) You have four meals a day. Breakfast, lunch, dinner and meds.

4) You are tired. Tired is you. You are one.

5) You have been in the shower and started wondering if you could live a full life if you never got out. Getting in was effort enough, Getting out doesn't seem plausible.

6) You really enjoy small victories like taking off your bra with one swift movement because you can bend in unnatural ways. YAY HYPERMOBILE JOINTS.

7) You haven't had a good nights sleep since the 90s.

8) You have a super power where you can always be more tired than everyone else.

Friday 12 June 2015

Staying sane in chronic pain: Having a mental clear out





Chronic pain is a way of life for a lot of people who suffer with it. While there’s a lot of importance in not letting it take over who you are, it’s hard to separate your condition from life itself. I haven’t posted on here for a while, and the reason is that I’ve been increasingly struggling to stay sane in the face of a condition that’s hard to manage and impossible to get a real hold on. It’s not easy to know what to expect, so default feelings turn to worry, worry turns to stress and in time it’s all you become.

This is not a good way to live. While it’s vital to take your condition seriously, and do everything you can to stay in the best health possible, I think the biggest battle is keeping your mind clear and able to function on a normal level.

I had to take a massive step back from everything around me that pointed towards chronic pain, EDS and the illness that’s overshadowed my life for the last few years. I removed Facebook groups from my feed, stopped replying to emails and tweets and moved away from this blog. I concentrated hard on getting a new job, went away on a break with friends, put more time and effort into my other website, and slowly I felt better.

How do you stay sane in chronic pain? How do you keep your mind focused on the light at the end of the tunnel when you can’t see it? I don’t know the whole answer, but I think a lot is about clearing your mind and sweeping aside everything that brings you down. Kind of like having a mental clear out every so often. I don’t want the work I’ve put in on this blog and the community I’ve built online to go to waste, so I will start blogging more regularly again, but I think it’s very important to take some time to try and be you, rather than be a person in chronic pain, and that isn’t always possible when you are surrounded by prompts and reminders.


I was fortunate enough to get away from it all (kind of, we all know you can’t banish pain for a holiday) to an immensely peaceful place and just relax for a couple of weeks recently. I’ve been getting edgy and worried again lately, so in a couple of weeks it’ll be mental clear out time again. I recommend anyone who feels like they are completely drowning to try and do the same. Oh and it’s Friday! So there’s a reason to kick back and take a few deep breaths. Happy weekend spoonies. 



















Tuesday 26 May 2015

The hypermobile guide to dating

First dates are notoriously awkward for any singleton. But trying to find the ideal moment where you can surreptitiously slip into conversation that your joints have a larger-than-average range of movement can make forcibly shoving tens into your paramour’s hand after they’ve kindly offered to pay for you seem fairly casual. There are various methods to do this that never go amiss. Maybe you need a little stretch and your suitor across the table gets the money-shot as your upper arm bends in parallel with your shoulders behind your head. Perhaps your yelp will give it away as your hip pops out on your romantic walk back to the tube station. Or for the more subtle of you out there, you can always try to explain why it is that you can never stop goddamn fidgeting.

However, there’s no easy way to tell someone new that you’re inhibited by your body’s ability to do too much within the first few hours of conversation. Will they be frightened off? Will they become overly concerned and insist on piggy-backing you everywhere? These things are hard to tell when you’re still two relative strangers sipping overpriced cocktails in an unnecessarily loud bar asking each other where you went to uni and oh my god are you kidding my best friend went there did you know her it is such a small world, etc etc.

For some of you out there, it may be easier to, quite simply, not bring your hypermobility up. But I think it’s essential to mention it. It’s part of you, it dictates your life and I think the honesty can be somewhat refreshing. It’s not a call to delve into your life story, but the longer it goes without being mentioned, you’re missing out on a personal detail that may even help someone get to know you better.

Looking back, I’ve tended to treat my hypermobility as a bit of a joke on a first date, and if I’m feeling particularly daring, I’ll start bringing out the big guns. Read your recipient, of course, but it’s hard for someone not to be a little bit intrigued by “I can unhinge my jaw like a snake and I can get my leg over the back of my head” .Because hypermobility can give you a sexy competitive edge, so shake what yo mama gave you. With caution, of course, you don’t want to put your back into spasm.

But what if you end up back at theirs? What if they start taking your top off? What if they see the stretch marks and automatically assume you’ve already had seven children? Chances are you’re being overly worried and they won’t give a shit because you’re being kind enough to sex them. If not, then move on, they’re probably a bit of a dick.

Sex and hypermobility, however, can be a bit risky at the best of times, even more so when it’s the first time. It may seem easier to pretend that you were moaning with pleasure and not pain at the way your leg just bent, but the cold light of morning can be especially chilly when you quietly creep out of bed to rescue your pants and you collapse on the floor as your hip goes into post-bang rebellion. Own it. Don’t be scared. Phasing of your new beau can be minimised by detailing your predicament beforehand and is my recommended plan of action. Otherwise explaining why you can barely stand as you awkwardly hobble back into your tights might send them into a spiral of guilt and you into an Uber to avoid embarrassment.

This is all worst-case scenario stuff, of course. No matter how barren Tinder may seem, there are decent people out there who will understand that you can’t walk as quickly as them or you need a little wiggle when you get up to put everything back in place. You’ll find out fairly quickly whether you’ve found someone who can support you, both metaphorically and physically. It’s easy to still feel guarded, occasionally even like a burden, or like your hypermobility limits potential adventures. Talk about it together. Work out plans where you can have fun without wanting to die and let them help you. And for the record, using an intimate hug as an opportunity to stretch your back out is the best possible way to kill two birds with one amorous stone.

Massive thanks to Anna Hallissey- (@The_Hallissey on Twitter) for writing this contribution post. 


Thursday 21 May 2015

14 sort of useful and fun things being hypermobile is good for



1) Reaching the bottom of a Pringles tube.

2) Shaking cocktails.

3) Reaching into your rucksack while it's still on your back.

4) Freaking people out for fun on public transport.

5) Baton twirling.

6) Back scratching.

7) Fitting onto packed tubes.

8) Seeing what's going on behind you.

9) Picking things up with your feet.

10) Turning things around in your hands to be the right way up when you're carrying too much.

11) Moisturising hard to reach bits.

12) Draining Pasta. Fancy pan-to-colander work.

13) Getting out of small spaces.

14) Turning a steering wheel.


Wednesday 20 May 2015

EDS awareness month- Taking a break from chronic life



So It's been a while since a post appeared on this blog. I've been distancing myself from thinking about EDS and everything that comes with it lately.

I've been having a lot of appointments about symptoms that may or may not be related, so I can't completely forget about it.

As it's EDS awareness month I really wanted to write about stress. Being chronically ill, as this blog has covered many times, comes with enormous amounts of stress. My stress reached a scarily high level recently, spurred on by worrying about my health and waiting for results and doctors to reassure me. Chronic pain is basically impossible to have without also having a lot of stress. The combination of everything you have to deal with is a perfect storm of mental unrest.

Something I feel has become important to me and that I feel people should try if they can, is creating some distance. It's not that easy for everyone, because my symptoms are much milder than a lot of others, but it can be done. I started by hiding groups I had joined on Facebook, and not opening links about sad stories of death and patients suffering or how the new government will impact healthcare. I just couldn't read anymore. I also stopped talking about it. Just for a week, I didn't mention it to anyone at all. I still have pains and aches and massive clouds of brain fog that I would usually moan about but I decided to try and remove myself from being a person with EDS.

It worked. I felt calmer, less worried, less scared and started sleeping a little better. I also stopped googling things related to EDS and checking Facebook groups and Twitter for symptoms that sounded similar to mine.

My geneticist mentioned that a lot of people with EDS become fixated on finding people similar and with that comes more anxiety and more concern about symptoms you might not even have yet. I told her all about this blog and how much I had gained from it, and also about how I felt I was too wrapped up in it.

Her advice of having a short break was completely ignored at first. I basically just continued as I was and carried on getting more and more worked up. I almost cancelled hospital appointments in fear of more bad news and that's when I decided it was time.

'Removing yourself' from something that pretty much runs your life is no easy task, but even if you can do it for a day, it's so refreshing. Hiding social media groups or not contributing to awareness for one week doesn't make you a bad person. Everyone needs a break sometimes. We have breaks from work and breaks from people, so since chronic illness is a full time burden, surely we're entitled to a break of sorts from that too?


Friday 10 April 2015

Feeling normal with a chronic illness



From the moment you wake up until the moment you fall asleep, you go through a roller coaster of emotions thanks to being chronically ill. Are any of those emotions a feeling of 'normal'? Probably not. I say probably not because it's HARD to feel like everyone else. It's hard for a number of reasons. Of course there is those of us who have chronic pain, chronic fatigue, symptoms that mean working is out of the question, symptoms that mean you are limited. With all of these comes the feeling of disappointment. 

You feel disappointed in yourself for not being able to do enough, disappointed in your body for constantly making you feel awful and disappointed in the time you spend doing nothing because it's all you can muster right now. It's of course completely fair enough to feel this way, because it's HARD to be ill constantly. Harder than you can ever truly communicate to others. It's even harder when people look at us and have no earthly idea about the pain or the tiredness or the sickness or how hard it is to even show up to life in the morning, let alone a job. 

The one thing that I have found useful of late (it's been a HARD few months) is to make sure I refer to myself as normal, despite the fact I am far from. I have been going out, balanced with spending 6 days across Easter not moving, I am going on holiday, I keep booking holidays and I try hard to attend all birthday and social events. I don't then put an immense amount of pressure on myself to go, because I know my limits. I'm having a hiatus from alcohol, which makes me even more different to my friends, but by going out and joining in, I feel normal. By going on holidays, even if I just lay down in the sun for a week while everyone else does watersports and goes snorkelling, I feel normal.

Feeling normal keeps me sane. It's when I constantly dwell on how set aside I can feel when symptoms are bad, I start to feel like I'm going mad. My normal might not be everyone else's normal, but it gets me out of bed in the morning.  

Tuesday 31 March 2015

10 important things to remember when you're having a bad pain day



1) Think about how much your body hurts right now and how much you have to deal with. Really think about it. Now think about how amazing you are and remember that you fight a battle every SINGLE day but still come out the other side. Basically, you're a bloody warrior.

2) Films, TV and good books exist to give us somewhere to escape to. Use them well.

3) You might be seeing a bit more of your bed than you want to at the moment, but imagine how much you miss it when you're at work or busy with life. Just snuggle up and relax, you deserve it.

4) You can write about it. Just write down how you feel. Write down how frustrated you are. Write down a list of things you'll do when you feel better. Writing is definitely a kind of therapy.

5) It might not seem like it, but there are people who know what you're going through. You really aren't alone. It's worth trying online forums or Twitter communities.

6) There will be a better day soon. There will.

7) Fresh air makes a big difference. When you're stuck inside it can become claustrophobic and miserable quite fast, try and sit in a garden or even by an open window and take in a bit of the outside.

8) Cuddles are free.

9) Remember the next time you are out and about and feeling better to pick up some stuff to make home a little brighter. Flowers, candles, postcards, bright cushions or even giant homemade sign to remind yourself how strong you are. Having a more pleasant environment makes the pain times a little easier to put up with.

10) Just to re-iterate- YOU ARE QUITE AMAZING. It really is quite important to keep that in mind.

Thursday 19 March 2015

Genetic counselling- What to expect at your appointment



So I sent out some feelers two weeks ago on Twitter, asking for people to share their experiences of genetic counselling. I got a lot of responses but only a few people had actually been for this kind of appointment, with a lot more people asking how to get one.

So to start off, I was referred through a dermatologist for this appointment. I am being monitored for a skin condition potentially related to Ehlers Danlos, and the dermatologist decided I would benefit from finally having an official diagnosis on paper. I was lucky, in that I found a doctor who knew about the condition. I had to be referred through my GP, which took some prompting, and they tested my bloods before sending the referral. The blood tests were to check my ESR levels, which measures inflammation, a test a lot of you might have had done. Despite it coming back with normal levels, I still pushed for the referral and my GP agreed to send it.

Three weeks later (I was referred to Northwick Park in London) I received a letter and an appointment. I was told waiting lists were long, which I expected, and my appointment was booked for May, a 9 week wait in total. I was then fortunate enough a week later to be offered a cancellation, which I took.

I did a lot of research online about genetic counselling appointments and what to expect. My top suggestions to prepare for a GC appointment are:

-Check the doctors background beforehand. make sure you are seeing a doctor who has knowledge of EDS, I asked to see someone specific by looking at the consultant list of the hospital and it was so refreshing to hear her level of expertise.

- Take as much family history as you can. The doctor drew out a sort of health family tree, which meant I had to provide a lot of information, mainly about my parents, their siblings, and my grandparents. Go as prepared as possible.

- Be ready to strip off and do some bending, stretching. I had to demonstrate my hypermobility, so I could be scored using the Beighton score. Dress appropriately!

- Write a list of EVERY symptom you have experienced in your memory, no matter how related it seems to be to EDS/HMS. Also try and remember all the scans and tests you have had in the past, and if you can go with results, take them. It's useful for the doctor, who will never have met you, to be able to get some good background.

-Prepare some questions. This is the kind of appointment you go into wanting to know so much, but it's easy to get carried away by how much the doctor will tell you, so make sure you remember everything that's been playing on your mind, and try and get an answer or suggestion.

-Ask about other clinics. If you need help with joints, ask about physio, if you need help with pain, ask about pain management. Your doctor will be able to refer you on to other clinics if necessary. It's definitely worth asking.

All in all, genetic counselling gave me an official diagnosis of EDS type 3, finally written and recorded and properly communicated to my GP. However I am not being followed up, so I did get a feeling of anti-climax out of the whole thing, as I was hoping for monitoring. However, as the word counselling suggests, these are excellent appointments for advice, so get as much out of your time as possible. Also remember to ask about family members- do they need an appointment too?

You can get more info and help with deciding what to ask and what relates directly to EDS from the Ehlers Danlos UK charity website.

This blog has a dedicated Twitter feed now: @ChronicHealth1 for lots of EDS and hypermobility related tweets. And tweets about food obviously.

Please do also follow @ehlersdanlosuk if you don't already, as it's a great online support system. You can find me @laurenrellis and I recommend anyone struggling with their conditions who isn't on Twitter to sign up, as there is a great online community.


Wednesday 4 March 2015

10 simple ways to cheer up and combat stress

Being chronically ill is no laughing matter. It's stressful, tiring, draining, often painful, sometimes expensive, repetitive, frustrating...You could go on and on with the negative talk. However, every so often, I see amazing inspirational stories shared online, by charities or fundraising accounts about how people are getting on with their lives and about incredible achievements.

It's good to have ways to perk yourself up when you're having a bad day (or a bad week) so here's 10 good places to start:

1) Do something therapeutic. Writing is my number one therapy, as you may be able to tell. I write this blog as often as I can , and I also have a lifestyle blog which focuses on other topics. I've found lately that having a really nice notebook to jot down ideas in has motivated me to write more, and this is a big step to feeling refreshed when I'm having a down day, or when my shoulders have been throbbing for ten hours at work.



2) Find an 'easy hobby'. It's all good and well doing something like golf or swimming or taking classes as a hobby to take your mind off of your stresses, but for the chronically ill these kind of things can be a stretch. I've read a bit of stuff about 'laying down hobbies' which sounds like sex, but it actually means things you can just do while lounging on the sofa. My newest hobby is Pinterest. Laying and 'pinning' photos of amazing kitchens and beautiful home decor provides me enough of a distraction to start to feel better about my day. I can also do it in pyjamas in bed or while having a break at work.

3) Go outside. If it's a nice day and you can, go and breathe some outside air, even if only for five minutes.

4) Write a list. When you can't achieve much it's easy to forget about the small things you do get done. A list with even the smallest of tasks on is satisfying to tick off. Shower- TICK.

5) Arrange a moan date. I do this with my friends a lot. We literally gather in my kitchen on a Friday evening to eat food and moan. The moaning soon subsides to laughter and we make each other feel better. If you can't do it in person, do it on Skype! You can even have a glass of wine 'virtually' together.

6) Look into mindfulness. Meditation is something I'm slowly being persuaded to try. I can't say for myself that it's been of help, but my biggest stress is health woes and I've been told by about five different people now that meditation is the answer to feeling calmer. You can get phone apps for it, some for free, so I am going to give it a go. If it's amazing I'll obviously write it on here sometime.

7) Look through old photos. I am addicted to photos and picture albums and even scrolling through tagged photos on Facebook. Looking back on a time or even a single event where you were clearly very happy can remind you that it's not all bad. Good things DO happen.



8) Think about deleting some things that make you stressed. A while ago I culled loads of Facebook I joined about symptoms and illnesses because seeing these everyday on my feed stopped being a form of support and started making me freak out about things I didn't need to. I have re-joined some and found different ones I find more useful and it's much better.

9) Schedule in an hour a few days in advance where you do something for you. A facemask, read for an hour, have a bath, read to your child, go for a walk, online shop, paint your nails, have a nap. Whatever you fancy,

10) Try and have something to look at that cheers you up. Not everyone can continually fill their house with flowers, but what about a framed print with some motivational words? Or even just something funny. Etsy do tonnes of these. This is a personal favourite:




Friday 27 February 2015

Rare Disease Day- The continuing story of Annabelle and Vascular Ehlers Danlos syndrome



I wrote about little Annabelle for rare disease day last year, and as much as there are lots of things I could I have opted for this year, I wanted to do another post. I have followed her story online for a few years now after coming across a twitter account her parents run. There have been a few stories in the media similar to Annabelle's (known as AJ or Bella) but overall, as VEDS is a rare disease, coverage is rare too. 

Her wonderful family set up a registered charity in her name, and now raise awareness through social media, events, their website, fundraising and media coverage in their local area. On Rare disease day this year they are launching a new website. 

Stories like AJ's and the work that charities like AJ'S Challenge do are so important in the rare disease community. Having just turned 6, this little lady is juggling both her conditions and being a normal child, and this is the case for many children with rare but serious conditions world wide. 

Here's a little more info about AJ and the charity: 


Annabelle's Challenge is a UK registered charity raising awareness of Vascular Ehlers-Danlos Syndrome (vascular EDS) to both the general public and medical profession to help aid an early diagnosis and prevent misdiagnosis of vascular EDS and to support patients who are affected by the condition.

The aim of Annabelle's Challenge is to raise awareness, support patients and families affected by vascular EDS and to encourage the medical profession to progress further with research into finding a cure.

At just 3 years of age Annabelle was diagnosed in December 2012 with Vascular EDS, it is a life threatening and incurable genetic condition and is the most serious variation of EDS, weakening the collagen in her tissues of the body and making her prone to possible arterial or organ rupture.

A torn artery can cause internal bleeding, stroke, or shock, and is the most common cause of death in patients with this disorder. Although serious problems are rare in childhood, more than 80% of vascular EDS sufferers experience severe complications by the age of 40.




Annabelle also suffers from rare blood disorder von Willebrands, with most children an accidental knock might only leave a slight mark but for Annabelle she comes off much worse with either excessive bleeding, deep bruising or even open trauma wounds requiring medical attention.

Her blood does not clot very easily and when factoring in the vascular EDS we have to watch her every move, not easy for anyone with a six year old that just wants to lead a normal life like any other child of her age.

So far this year Annabelle is doing great but we can’t ignore the fact she is a ticking time bomb, at any time day or night she could suffer from a spontaneous and ‘significant’ event which could end up in a visit to A&E or sadly worse case it could prove to be fatal without any warning.


To help raise awareness of the condition around Rare Disease Day, Annabelle has recently taken to the field with her local football club Bury FC as their mascot. During the match day visit Annabelle met with the manager and players and raised awareness of Vascular EDS before proudly walking onto the pitch with the players in front of the crowd.



Please do check out the new website http://www.annabelleschallenge.org/ and find out more about Ehlers Danlos and the challenges faced by parents of children with rare disease. Events like Rare Disease Day give patients, families, friends and doctors a chance to have a voice and make changes, so please share this in the hope it can help another parent, person, child, friend or doctor put together a puzzle. 





Wednesday 25 February 2015

The power of the online community in healthcare





So everyone knows and has been told a hundred times over to never Google your symptoms. Don't go online and try and work out what's wrong with you, it'll probably be wrong and misled. But what about when you can't get the support you need from doctors or clinics? This is the issue that faces thousands, probably realistically millions, of people worldwide with chronic and rare diseases and conditions. 

The internet, particularly social media, is now an integral part of most people's daily lives. We share and post all sorts, from our breakfast to our emotions. Those people who have symptoms that don't add up, or know they suffer from conditions that aren't adequately cared for by medical professionals are making waves online. I first found this when I was diagnosed with hypermobility syndrome. I didn't get a great deal of support or much useful advice and was soon discharged from all clinics, despite the issue not being under control. My symptoms then got worse and more started slowly appearing and I realised I most likely had another condition, which doctors agreed with but again, not enough support. 

My story is not unusual, and I ended up turning to online forums, Facebook groups and Twitter feeds for answers. I found charities online that had growing followings on social media and plenty of people willing to share experiences. I've learnt so much from these groups and websites and found ways to handle my condition that have helped. That was also how this blog was born. I wanted to put my journalism and communications degree to good use for something that mattered to me. Since then I have built up my own online community. This blog now has a Twitter feed: @ChronicHealth1, I have lots of followers who share my condition online and I use Facebook groups and forums to read about research studies and learn about the ways other people handle flare ups. 

Of course, the internet can be a dangerous place for an unwell person to frequent. Things spiral quickly and patients end up fearing the worse. I've done it myself plenty of times and always regretted it. If you are using online resources to handle a condition or find out what might be wrong, start by looking up reputable charities or societies and see if they are on social media. Also consult your GP if you strongly suspect something, don't just decide that you definitely have it and start trying to come up with treatments. It's really not worth it. However these online communities for diagnosed conditions are so helpful and valuable and many people rely on them as a source of emotional support. I see so many comforting stories and useful links posted on my Twitter feed everyday that I share and sometimes apply to me. 

There's a reason online community management is growing as a job in healthcare. These resources are important and powerful and when used properly, monitored and maintained they can be of great use. 

Anyone reading this with hypermobility, EDS, fibro or other related conditons, check out @ehlersdanlosuk and @HMSAcharity on Twitter, or look into the hastag #spoonie. Type your condition into the Facebook search bar and you will most likely find a group to join. 

Support can come in all shapes and sizes and in 2015, that can include your laptop or smartphone. Just try and be sensible. 

Wednesday 18 February 2015

5 awkward hypermobile situations- Part 3

So part 3 of this series focuses a bit on things that other people do that cause stress. And stress in general. I've had number 5 and 4 happen to me recently, so here is my rant for the week:



1) Trouble eating? Jaw dislocation and pain in hypermobility is not uncommon. Sitting at work or having lunch with friends or even eating dinner at home on the sofa- there is no ideal situation to have something violently click in your mouth and the food to fall out. Sadly yes, this does come from experience. Who doesn't love half-eaten digestive biscuit in their lap in a busy office?

2) Bags. Now, a lot can be said for deciding to use a small, lightweight, sensible bag. Good for your back, easier to carry, less chance of injury. However it isn't always possible and girls in paticular LOVE their large bags. I'm thinking a lot about suitcases here. I have had some true nightmares with them. Dragging for more than 1 minute causes bad shoulder pain, picking them up causes bad shoulder pain, forcing them shut causes, (yep you guessed it) bad shoulder pain. Relying on the kindness of strangers or your friends to lug your bag down the stairs at a train station becomes a key part of travelling. That or just taking no clothes away with you and hoping for the best.

3) Lifts. The hypermobile community and stairs are not the greatest of friends. Having ankle, knee and hip issues means stairs are a big problem in some cases, particularly massive flights of them. So you opting to use the lift makes sense, and you might when planning ahead think this will be fine. However, where is the lift? Why is a ten minute walk away? Why is it out service? I have to really let the people with buggies go before me don't I? It's surprising how hostile people with 'life entitlement' can get.

4) 'Would you like a photo madam?'  Limping, using crutches, being in a wheelchair, having to receive help. Anyone who has ever used an aid in public without a cast to explain things, or needed to use a wheelchair will probably have dealt with their share of staring strangers. It becomes it increasingly difficult when you're already frustrated to not vent your anger at people who gawk at you. Maybe we should carry around Polaroid cameras for people to have pictures?

5) Show us a trick then? Explaining your condition to someone and taking time to educate them to be asked 'ohh! Can I see a party trick?' is enough to set even the most patient person off. Not taking a frankly aggressive tone when you explain that NO you won't start bending your joints and causing yourself pain and possible dislocations just to show off, can be quite the feat.

This blog now has it;'s own Twitter feed! I wanted to make a profile for it where I can concentrate more on sharing relevant stuff. You can connect with me @ChronicHealth1 for the blog and for further hypermobile musings and lots of talk about food @laurenrellis

Tuesday 17 February 2015

Join forces for Rare Disease Day 2015



Rare Disease Day takes place every year on the last day of February. The idea behind the day itself is to raise awareness, both among the general public and decision makers. This is a day for people affected by rare disease to have a voice and make a splash. People are encouraged to come up with events and take part all over the wide, meaning often patients who would never normally connect with each other have an opportunity to.

This is a perfect chance to to do something, no matter how small, to support those who are impacted by rare disease, patients, families, friends, anyone and everyone. Since being launched in 2008 by EURORDIS, many events have been set up and ultimately a great deal of coverage which is often hard to come by, has been picked up and spread by the media.

If you are interested in learning more, finding out about events, or supporting the day yourself, visit the website.  You can also connect on Twitter- @rarediseaseday and on Google+ +rarediseaseday . 

My last post dedicated to RDD was about Annabelle, a young lady who has a rare type of Ehlers Danlos syndrome. This year I wil be following up with an update about Annabelle and the charity her family have set up, so look out for that.

Remember if you personally are impacted by a rare disease, want to raise awareness or stand up for someone you know, February 28th is a great chance to do it.





Wednesday 11 February 2015

Why a can-do attitude is so important



Battling a chronic illness means that you are constantly faced with  things that you can't do, or join in with or just fear doing. When you are in pain, exhausted, emotionally drained and just generally not feeling well, it can become almost impossible to pick yourself up and go about life in the way you want to.

In some cases, patients are simply too poorly to carry out normal every day tasks, let alone embark on careers, holidays and social events. This is a whole other battle in itself. However, facing an illness where you do have your good days, and you can manage the pain and symptoms to some extent, mean you have these fleeting times of feeling like you can do it. Whatever it is, being traveling, a weekend away, going to work for a full week or just having a night out with friend, you feel able and ready to take it on.

Hypermobility syndrome is a limiting condition, and as I have written many times before, impacts life in a big way for those who have it. It's important when you have plans, no matter how big or small, to plan. You need to ensure you have treatments with you, be it painkillers or a hot water bottle and that you have plenty of support available should you need it. I am a big planner, and it has meant that I have been able to do so much that three years ago, I would have thought impossible.

When I booked a trip to Isle of Skye with my friends, I was in the first instance really excited, and then began to worry. We decided to drive, and believe me, it is FAR. We were in the car for 14 hours going up, with a few stops to eat and stretch. Needless to say, I needed a heat pad, lots of leg room, ibuprofen and some serious relaxation during and after the journey.

Skye is very much a walking and scenery holiday. It's different to anything I would normally do and I accepted from the off I would be limited and went there with a nagging worry that I would really hurt myself or end up laid up in bed with a dislocated hip. However what I also went with was a can-do attitude, good trainers, a list of exercises and knowledge of what I can do and what i can't. Yes, I have to refrain from doing as much as my friends, but I can still do plenty. I can still go on days out and walks and travel around, I just have to do it for me, within my limits. So that's what I did. ( I also looked up and located the nearest A&E, because you know, life and all that.)

I did have to hang around on the side of a giant hill while everyone else went all the way to the top, which wasn't ideal, but I still went, and I still gave it a go and I got to take amazing photos and sort of play in some snow (let's be honest, snow isn't for the hypermobile). I needed help getting down and I had to take painkillers in the evening, but to be honest, I need this most days, sometimes even on stairs, so it wasn't much different.


I went out everyday, walked really far, climbed a bit, tasted whiskey, saw some rainbows, saw an eagle, saw a seal, drank lots of coffee and ate loads and I am so glad I did. I kept check of my joints and pain, used heat when I needed it, luckily had a friend with an electric massager, took hot baths and took everything slowly and carefully.

I mean , there was a hairy moment when I couldn't cross a river (I didn't realise this was going to be necessary as it wasn't on the walk list or map) and I had to rely on the patience and good will of my friends to help me, but despite the ten minutes of joint pain that followed and the back ache that evening, I felt good. Everyone felt a bit like an intrepid explorer, but I felt like I had conquered something more than a 9k trek.


Having an can-do attitude means I think more about things in advance and I come up with ideas of trips I want to do, places I want to go and friends I want to visit. I think foremost about the experience, and then I do the planning and logistics of doing these things with a condition. If I can't do them, i can't do them, at least I have other things floating around my head to keep me going. it'll never stop being frustrating, but it will also never rule my head.

When I was first diagnosed and in constant pain that was managed badly, all I wanted to do was lay in bed or in the bath. I stopped exercising and the idea of going away and being on a plane or in a car was laughable. Now though, I just think 'I can', until I realise I can't, and that's okay. The positive thoughts alone make a big difference. Sometimes just lounging on a sofa in front of a fire is enough of an experience.














Tuesday 3 February 2015

5 awkward hypermobile situations- Part 2



A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

Friday 30 January 2015

My hypermobility care mission: an update





This is a short post, but I think it goes quite well as a follow from my first of 2015. A big part of handling illness is education. Teaching yourself and taking advice from doctors helps you to control and look after yourself better. I constantly learn new things, and I did promise myself I would put my condition top of my priorities this year. This has made for a fairly busy January, but a very productive one. It's been busy in other ways too, I haven't just been hanging around hospitals and clinics thank goodness. I have had an anniversary, holiday planning, lots on at work and have tentatively gone back to running. I will write a post on this soon.

I went to see a dermatologist about some bleeding under my skin on my foot, and we came to conclusion it was done at a wedding by some very uncomfortable shoes about a year ago. Typical, the shoe saga strikes again! It's becoming a constant problem for me, but that's for another time. This is apparently now a stain rather than continuous bleeding and she wasn't too concerned by it.She wrote to my GP who then suggested I have some bloods done.

I had my full blood count and an ESR test done for the first time to my knowledge. The ESR test picks up on inflammation in the body and can therefore detect infection. It can also be used to test for autoimmune disorders and connective tissues diseases. My GP predicted this would be higher than average and flag up something, but it was totally normal. The mystery continues. All my bloods were normal actually, and my clinical colleagues assured me I am a very well person on paper. It's a shame this doesn't filter through to my general feelings!

One particularly exciting thing has happened. I did some research into clinics around London that see hypermobility and EDS patients. I emailed a doctor who sadly only specialises in children now, but she works at UCL and pointed me in the direction of a clinic I could potentially self refer to. She was extremely helpful and proved that initiative pays off. I also pushed for a medical genetics referral, which my dermatologist backed me up on and it actually got done. Success! So I was referred to Northwick Park Hospital in London to the genetics team and am now waiting an appointment.

I will report back on what this appointment is like, as a few people on Twitter have mentioned they are keen to be referred too.

That's it for now!
Happy weekend everyone.

Monday 26 January 2015

5 Things patients of chronic illness do...

From writing this blog, being a patient myself and immersing myself in online and hospital based communities, I have come to learn that there is much more to chronic illness than the condition itself.

1) Educating the educated

Chronic illness can be complicated, and particularly with under-diagnosed/ rare diseases, doctors will often have a gap in their knowledge. In my experience, and I know I am not alone, I often have to give a detailed description of hypermobility syndrome and the symptoms that come with it when I get referred to a new doctor. Obviously specialists will know what they're talking about (you hope) but it becomes the norm to explain your condition to doctors and for them to learn from you.



2) Adapting

You learn to be chronically ill in all situations. On the bus, at work, in the supermarket, looking after kids, having a shower. Every situation becomes adapted to you and your condition, and the adaptions aren't always good. It is however, a massive feat to carry out simple tasks while having a bad day, particularly living with chronic pain. The term 'chronically awesome' is no lie.

3) Forming communities

I didn't know that patient communities existed before I got unwell with hypermobility. Even then, it took me ages to realise there were Facebook groups, charities and forums bursting with information and support. You just type 'hypermobility' into the Facebook search bar and you're met with an abundance of groups and pages. It seems that when people have to really fight something, they fight together. It's been really interesting for me to grow a small community on Twitter off the back of this blog and my timeline is often littered with new information. You can join me on Twitter: @laurenrellis or on Instagram, where there is also a lot of unexpected 'spoonie' action! Larellis9

4) Learning and absorbing

To educate others, patients themselves have to be educated too. This is why communities and the great work done by charities like Ehlers Danlos UK and the Hypermobility Association are so important. Knowing the basis and learning about conditions is half the battle in the beginning. I was letting physios treat me for damaged rotator cuffs, even after they diagnosed me as hypermobile, because I just didn't know anything about it. It's surprising just how much patients learn about themselves and the world of medicine. Surprising in a really, really good way.

5) Generally being heroes

Ask anyone, it's bloody hard being chronically ill. It's hard having a condition that's not widely understood and without a straight forward cure or treatment plan. It takes a strong person to handle these things and they often make a strong person too.

Wednesday 14 January 2015

SMARD- Read Louie's story

It's Rare Disease Day next month, which I always try and do a couple of feature posts on. They are of course usually about EDS or HMS, but this time it's something different.

This post is about Louie, the smiley little boy below.


Louie is almost three years old. He is son to Natalie and Reece and very proud older brother to Charlie. He like watching Disney films, being read to, going swimming and playing on an ipad, just like most other boys his age.

As you can just about see in the photo, Louie has a tracheostomy. This is because he has a rare genetic condition called SMARD- spinal muscular atrophy with respiratory distress.

Some background on SMARD from http://www.actsma.co.uk/page/smard :

SMARD is a neuromuscular disease which causes progressive weakness of the muscles and severe respiratory distress, due to paralysis of the diaphragm, which tends to be the first noticeable symptom.  This is caused by a breakdown of the link between the brain and the muscles due to affected nerve cells.
Some signs may be present before birth, with the mother noticing less fetal movement than that of a healthy baby.   Most SMARD patients will experience respiratory failure within their first six months of life, and go on to require artificial ventilation.  Symptoms seem to appear in reverse order to that of SMA Type 1, with respiratory problems coming first, followed by severe muscle weakness, especially in the lower limbs.  
Health typically deteriorates very quickly by the age of 2, but there is such a range of severity that different cases are picked up at different ages and progression can vary greatly

 Both Louie's mum and dad carry a mutation of the SMARD gene, which only 1 in 50,000 people do. Charlie does not have the gene. The condition is progressive and life limiting and there is no cure. Louie needs round-the-clock care, and despite the demanding nature of his condition, he is happy and content.



 The condition does not affect Louie's brain, and as he grows older he is desperate to communicate with those around him, but he cannot talk. His family are currently trying to raise funds for him to have a piece of equipment called a Tobii Eyegaze . The Eyegaze is a special computer which will give Louie the ability to communicate using his eyes. If he has this computer, he can communicate with his parents and his nurses and carers, he can tell them if he is happy or sad, or uncomfortable, and he can have improved quality of life. It will also mean he can interact with Charlie as he grows up. He will also be able to tell his mum and dad what he wants to do, for example, go to the cinema, or just stay home and watch a film. Something that you wouldn't normally give a second thought to, is such a big deal for a toddler like Louie. Unfortunately there is not funding for this, so his family has to raise £6,600 in order to get the Eyegaze.

As you can imagine, this is very important to Louie and his parents. You can take a look at their fundraising page here and find out more about the campaign. You can also share this on social media and across Blogger. The more people find out about SMARD and Louie's campaign, the better.

For everyone with a rare disease or condition, Rare Disease Day is excellent and a chance to spread the word and raise awareness. The website can be found here and they are also on Twitter- @rarediseaseday