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.  

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.

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:

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. 

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