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.

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. 

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. 

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?

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.

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:

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. 

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

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.

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.

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.

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.

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

5 awkward hypermobile situations

5 situations I have faced with hypermobility.

5 situations that have been awkward. 

5 situations that I fully expect to happen time and time again. 

1) The public dislocation

 'Hi there, can you come pick me up? My hip has come out and I can't move.' This is a conversation I have had on the phone a fair few times. There you are, just going about your daily business, when suddenly your leg gives way and you can't continue. Not so easy to explain to passers by why you are awkwardly half-perched on a wall with limbs at strange angles. It's even less easy to explain this to colleagues when they watch your manager half carry you into a lift.

2) The moaner

Spending a great deal of time with someone who moans constantly about even the tiniest twinge of pain or treats a common cold like the plague can be awkward and VERY annoying. Deep breaths. It isn't their fault. They don't feel ill often, give them a break. It's easier said than done though. What you really want to do is bellow directly in their face 'YOU DON'T KNOW PAIN' and then just get back to your day, but of course hypermobile beings are of the thick skin variety. Most of the time anyway.

3) The 'phoning in sick' conversation

'Yes it is my joint again. No I don't have a cold.' Getting an employer who understands or sympathizes with a condition like hypermobility is tough going. The idea of phoning in sick because you have unbearable pain for seemingly no reason can be demeaning, awkward and frustrating.

4) Getting undressed

Having to ask for help getting jumpers, sports bras and sometimes even jeans off has become a normal part of my life. It's more often the tops, but being found in bathroom tangled in various clothes with the shower running and a shoulder half out of it's socket is all fun and games until it really isn't fun and games.

5) Really nice clothes, really weird shoes

Let's face it, when you have dodgy hips and ankles and are prone to knee pain, you can't totter round in a pair of Louboutins looking fabulous everyday. Comfortable shoes are everything. Receiving some strange sideways glances when your lovely dress is teamed with sketchers is absolutely worth it to be able to walk home at end of the day without an episode of 'we need to stop. Something's come out.'

If you have hypermobility and or EDS, come follow me on Twitter. I tweet resources and bits of my medical story. I tweet about other stuff too! @laurenrellis

6 changes to make 2015 healthier

Living with illness or not, everyone knows it's important to make some effort towards being healthy. Those who have experience of living with a condition  will also be aware that having good health and being in good shape can improve your outlook. Exercising much more in 2014 made a difference to my hypermobility, so in 2015 I want to continue with the positive changes. I spent ages on Sunday trawling through websites and blogs to look for some inspiration of things I can put into action, and these are my chosen 6:

1) Drinking a mug of warm water and lemon in the morning

For a long time my first drink every morning was coffee, which is not good and I have tried really hard to cut the habit out. I've heard a lot before about trying warm water first thing. It apparently helps with digestion, can be a natural way to help alleviate pain, can help with constipation and weight loss. The lemon is a good source of vitamin C, good in these winter months when there are germs a-plenty, and is also a natural anti-bacterial product. My hairdresser also swears it does wonders for your skin, which is always a big advantage.

2) Using a health app

I rarely put my iPhone down and I know I'm not alone in that. Health apps are being used more and more and I get lots of emails at work advertising new ones. They cover literally everything, but a good general one that monitors your intake of food and drink and exercise is a good place to start if you have nothing really specific to target. My Fitness Pal has long been a favourite of mine. I used it loads when I was a student and wanted to stop neglecting my diet. It basically tracks what you eat and drink against how active you are and tells you what you should be aiming for each day. It's great for weight loss if you want to slim down, but you can also use it to just make sure you aren't over or under-indulging and even to gain weight if you need to. It's free to download and really user-friendly.

3) Eating fruit before anything else

I've always been fairly good at fitting in fruit and veg in my adult life. What I do find though is that I cram it all in during the afternoon or evenings, meaning I am less likely to get the recommended 5 a day (or 7, depending on if you can handle that much!) which I would like achieve. Eating a piece of fruit first thing is actually pretty easy, especially something easy like a banana or apple. Including it in your breakfast helps too, but if you are busy and in a rush, grabbing something out of the fruit bowl is ideal.

4) Using fresh ingredients instead of jars/packets

This would depend a lot on how you feel about cooking and how much time you have. There are lots of great recipes out there for class dishes like spaghetti bolognaise, chilli con carne and curries that can be made fresh with spices and vegetables, rather than using shop-bought jars and packets. It's actually not that difficult either and you can alter things to be more to your taste. Once you have a good stock of spices in your kitchen, you don't even need to buy much each time you make a meal. Simply scratch is a really nice site that has a lot of recipes on, if you are looking for a place to start. I also want my weekly food shop to look like this more often:

5) Alcohol swapping

Okay, so if you love wine, this is a hard one. I LOVE wine, it's a complete guilty pleasure and I could could easily have a glass almost every day, which I don't, but still. It's also up there with the most fattening of all the beverages, which is sad. I'm going to attempt to switch from drinking wine to trying spirits with soda/tonic or low fat soft drinks. This may or may not go well. A couple of friends have mentioned in the past how much this has helped them lost them weight along the way, which isn't my goal, but it seems a bit healthier. Well, as healthy as it can be where alcohol is concerned. There is no way red wine can completely be banished though. No way,


6) Do more things I enjoy

Mental health is just as important as physical. Being happier overall is far more likely to make me succeed in the above, because when I am happier, I am more motivated in general. I ended last year stressed, tired, overworked and a bit fed up, which had a negative impact on my general well being. I'm going to attempt to do at least one really fun, enjoyable thing a week, even if it's something silly like watching Bridesmaids with my housemate for the 393485th time. Smiling is good for you, laughing is good for you, so it's time to do more.

I'm not looking at these as strict resolutions, because they won't all last or work out, but it's good to have things to aim for. Happy, healthy 2015!

2015: The year of the invisible illness puzzle

Anyone who has read this blog before (and if you haven't then welcome) will know that I've spent a lot of time wondering what's wrong with me. That's fairly normal for anyone who has an invisible illness. Having nothing noticeably wrong means you can't point it out to a doctor or a friend or your mum and say "look at this, this is the problem."

There are so many pieces to put together when you are essentially self-diagnosing. A lot of invisible illnesses aren't properly looked after, especially in the NHS. It's hard to get a referral, hard to get a follow-up, hard to find a doctor who knows enough to truly make a difference. It's hard full stop.

There are thankfully a lot of resources out there, which means the many people who are piecing together a puzzle have some help. It's not always the best way though, but you do what you need to. After another confusing medical appointment last week which left me with more questions than answers, I decided that 2015 has to be the year. This has to be the year it happens. I need to get answers. 

It's really difficult to face up to things sometimes, particularly when it's something like health. Your health essentially is a belonging of yours. It has a mind of its own and if can rule your life. For people that are much more aware of their health, not knowing exactly what the real issue is can take so much away from life. 

For example, I have bad joint pains, urinary tract issues, headaches, sight problems, dislocations, bad bruising, poor immunity, and now bleeding under my skin. Hypermobility- diagnosed. Ehlers-Danlos- as good as diagnosed. But what else? The doctor I saw this week was unsatisfied by what I knew. He didn't think that was it. He was confused and needs assistance from another doctor. Another referral. Maybe the 20th. 

So now the waiting game. Again. But I'm not satisfied with waiting. Instead of waiting, I'm going to get back into heavy research, use my fortunate resources (doctor colleagues and friends) and go back to all of those who have examined, prodded and poked me. I think 2015 is time for some clarity. Everyone who knows how I feel, and there are plenty of those people, will probably have had similar feelings when the new year reigned in. Time for change. Time to try and make life more comfortable, less painful and healthier. I hope those who feel less positive can change that. I hope time. Particularly time that is the next 12 months, can change that. 

5 things invisible illness sufferers do better than anyone

1) Be tired
When people get in from a long, hard day and kick their shoes off to a chorus of 'I AM SO TIRED', they really have no idea. Lots of invisible illnesses, like POTs, fibro, EDS and HMS, come with fatigue. It's not so much feeling tired, as feeling like you absolutely have to be laying down with your eyes shut immediately or you will just fall over. It just hits you like a train. There you are, going about your business, working, gardening, reading, whatever, and BAM. You are so absolutely exhausted it's as if you've not been to bed in a year. Your head feels like it's been pumped full of hot air and twice the weight it was a minute ago. Now that is tired. Really tired.

2) Poker face
There are times when you are doing something normal, say sitting at a desk at work, when suddenly a body part will explode with burning pain for no apparent reason. No one around would ever know, because you just smooth over it, try not to move, keep calm, and carry on. Dealing with chronic pain leaves you a good poker face. You can be feeling a lot of 'OUCH OH MY GOD' on the inside, but on the outside you look cool, calm and collected. Of course sometimes you can't contain it, and the bad days are bad, but you can regularly look utterly normal, perhaps even really well, when in reality everything hurts and you can't get out of your chair or even lift a cup. You'll have to be forgiven for the slight twinge of crazy when you flash someone a smile.

3) Appreciate
The good days are there to be used and used bloody well. Being cornered by illness and feeling like it dictates life awakens you to a sense of gratitude and appreciation most people don't know exist. Feeling almost brought to tears when a hot water bottle starts to ease your back ache or barely believing your luck when you can have a day out with family makes you thankful. SO thankful. You appreciate everything a million times more than is logical and really routine, average things can make your day.

4) Sleep badly
Sleeping badly is not taking an hour to drift off and waking up a few times. Sleeping badly is taking time to find a position you can lay in, waiting to see if you can stay in that position, hoping you can fall asleep, not falling asleep because you have to continually move, waking up in need of painkillers or to take medication, dislocating a joint from rolling over.....The list goes on. Chronic illness and sleep is a battle and no one fights quite like sufferers of these conditions. Painsomnia. Not fun.

5) Play it down
I used to wonder sometimes how people would feel if I could transfer all my symptoms to them for just ten minutes. Dealing with invisible illness, such as Ehlers-Danlos hypermobility, can test the patience of you and everyone around you. More often than not you probably play it down. Tell people you're okay and carry on with day-to-day life when really it's not okay at all. You're in pain, you're distressed, anxious, stressed, forgetful, brain-fogged and so tired. It's tougher than anyone can imagine, but playing it down to seem not so bad at all becomes quite the talent.

What does your condition mean to you?

Suffering from an invisible illness can be extremely isolating. Knowing there are others out there the same who are fighting similar battles can be a great deal of comfort. This is something that people mention again and again on forums, Facebook groups, through charities, Twitter and on other blogs that I read. It is a recurring theme. It's almost like a daisy chain, precariously joined together, people support one another and the chain keeps getting bigger. It needs to continue getting bigger for things to improve on other levels, like medicine, doctors and professional support.

Everyone handles their illness differently. While symptoms may be the same, no two people are completely identical in the way they live with chronic illness. The words below are from three different people, from three different parts of the world. They have given three key words and a short summary of how they feel about their condition. They speak different languages and live different lives, but they are united in one thing- fighting their condition. 

Lacey:

 Progressive, unknown, annoying

My hypermobility pain has increased significantly over the last two years and I was misdiagnosed and therefore mistreated for eight years before getting the correct diagnosis. I am still being bounced around different hospital departments trying to get to a specialist in order to manage the condition. I try to manage it as best I can and my current top tip is sleeping with a pillow in front of my stomach like a pregnant woman to prevent a recurring trapped nerve in my spine!

Mendy:

party tricks, pain, planning

I’m always in pain, always tired and although the doctors told me it would get better with age, I find that my joints keep popping out of my sockets more. With every activity I want to do I need to plan, either take more painkillers or have more sleep, have more recovery and say no to things more often. This is my life. I’m not sad about it. I was born with hypermobility. It’s only a shame that this is something not visible from the outside. I've lost friends over the years who haven't understood why I wasn’t able to go to birthdays or social gatherings. In my book, those aren’t friends. I live my life to the fullest, do whatever I can. I work, have my own house, lovely friends, nice hobbies and I’m happy. I’m not my hypermobility, I am Mendy with the funny joints.

Jay:

Falling apart inside

EDS has single-handedly taken away so much from my life, but at the same time gifted me an abundance of maturity and understanding at a very young age. Having such a dramatic, hidden change to your life can obviously be dizzying and the lack of research and understanding for such a difficult condition to live with is extremely frustrating; but what this means is the people I've met and spoken to with EDS are some of the most courageous and resilient people you could imagine. They have for the most part become their own doctors and created a community of people who know how hard it is to live with EDS who support each other tremendously. And for that I am grateful.

I would really like to receive more of these short pieces from people who suffer invisible illnesses and live with chronic pain. If you want to contribute to a future post please email laurenrellis010@gmail.com  

6 ways you know you have an invisible illness

1)      You wake up in the morning looking and feeling fine. All is going well and you think this might be a good day for you. A day where you can get things done and feel like a normal, functioning member of society. Half hour later you are falling apart, things hurt for no logical reason, you can’t quite make it into the shower and you consider putting painkillers in your tea. You still look fine though, and you can't decide if this is good or bad.

2)      You approach inanimate objects with an air of extreme caution. You can’t just throw yourself onto a sofa or jump into bed because who knows what the consequences will be. Waking up in the mornings on a beautiful day and throwing open the curtains is far too dangerous. Your shoulder could come out of its socket and ruin the whole day. Sometimes you also need to mentally prepare to shower. It’s not a decision to be taken lightly.

3)      You experience deep and confusing emotions If you feel well enough to let your hair down and have a few (or a lot) of drinks at the weekend. While most hung-over revelers wake up on Sunday worrying they have drunk-texted someone they shouldn’t or accidentally phoned their boss, you wake up too scared to move. Who knows what damage you might have done while having fun? You have to slowly and carefully make your way to the kitchen to re-hydrate and eat all manner of carbs. If you have got away with it you then begin to feel invincible and consider doing other activities that you normally avoid before realise your head hurts too much and you go back to bed.

4)      Explanation exhaustion. Telling people who aren’t aware invisible illness exists or can’t quite comprehend them becomes tiring very quickly. You may even have devised a short, concise script of what to say when someone asks why you were off sick or why you can’t get out of your chair.

5)      Planning is something you have to do with great care. You never know when symptoms will flare up and mean you can’t go on your day out or go visit your friend or even go for dinner. Plans are for days when you feel good and you know your body will last the duration. You also have to ensure your friends and family understand your condition so they can’t hit you with ‘but you LOOK fine, maybe you can come for a while?’ 

6) You often have to face the injustice of feeling hungover when not so much as a drop of wine has passed your lips. Waking up with a raging headache, joint pain, shaking, needing painkillers just to face the shower. All of these are followed by the overwhelming urge to shout 'WHY ME? WHY? WHY?' but instead you just get on with it and start your day the best you can because you are a God damn warrior.