Disabled? Or Differently Abled?

Its been a couple of months since I last wrote a blog, its been a busy time with endless appointments but I'm finally under the care of professionals who are experts in my condition and I'm finally on a more positive path, not to a magical cure, but to proper long-term management.

Since being officially diagnosed with EDS (Ehlers Danlos Syndrome) three months ago, I've begun to feel differently about my condition and I guess I've gained some kind of inner acceptance. Hearing the professionals confirm that yes I do have a debilitating and progressive condition, that no I'm not a hypochondriac, all this pain isn't in my head, and no I am not going mad, is hugely reassuring, after so many years of half hearted attempts to guess at medications and treatments that may or may not help that often hindered and caused more issues!

I've got to the point where I no longer have a pain free day, there is always a joint that has subluxated (a partial dislocation) or joints that are constantly painful. When you live with chronic pain, you get used to it after a while and it becomes normal. Family and friends ask me daily how I am feeling and whether I think my pain levels have improved and it is honestly a REALLY hard question to answer! Everyone experiences pain differently, but what should I say? "Yes I'm fine" kind of indicates I'm feeling "normal" - whatever normal is! If I reeled of a complete list of all my aches and pains whenever anyone asked they would be thoroughly bored and probably quite disbelieving!! So recently I've decided to answer "Well today my worst joints/symptoms are .... " and the people closest to me know that there is lots more giving me trouble but I'm not going to mention it!

EDS can't be cured, its a genetic condition, I was born with it, but it is rare and very hard to diagnose, hence I reached the grand old age of 37 before it was finally confirmed! The problem with these late diagnosis' is that the majority of people with EDS are hypermobile; this means our joints are too bendy, caused by faulty collagen in the body. Bendy joints move too far and don't stop at a normal range of movement - you've probably heard people referred to as "double-jointed". Hypermobile joints easily subluxate (partial dislocation) or dislocate and people with hypermobility are prone to sprains and other injuries.

Without early diagnosis and correct management people with hypermobility are damaging their joints without even realizing it, just from every day wear and tear. I found out yesterday that both my shoulder joints have degenerated to that of a 70yr old already, but with the added complication of tendonitis and burstitis too which leaves me in a lot of pain and with restricted movement. This isn't caused by a sports injury or through over-use, it is purely from day to day living with hypermobility!

Our options for all these damaged joints are usually limited as surgery isn't generally advised for people with EDS. This is because not only do we have weird joints, we can have issues with our skin (which affects wound stitching, healing and scarring), our internal organs (again due to the faulty collagen), and also reactions to anaesthetic too. Then add into the mix the recovery period after surgery, every day of immobility weakens our muscles further, leading to more unstable joints - it's a constant vicious circle! And remember, this dilemma isn't just for an odd wonky joint - it is often affects most of our body!

So what can us EDSers do to help ourselves?

The most important thing to learn is to pace ourselves. If we can learn to do this, we are a big way to managing our condition long term. Personally I think this is the hardest bit to learn and is something I am only just beginning to get my head around. The theory behind pacing is that by carefully scheduling everything you do each day, you can manage a consistant amount of exercise, mixed with some of the essential chores in life and some fun activities too - without over-doing it and without aggravating pain flare ups. Sounds great doesn't it - well it is (when I follow it!)! Being someone who finds any kind of routine hard to stick to, I have found this a huge challenge, but I would much rather teach myself to be ruled by a schedule than to be ruled by pain!

I've found this brilliant pack by Hannah @ Stickman Communications to help with pacing. http://stickmancommunications.co.uk/Pacing-Pack .

The second most important thing once we have a Pacing Schedule in place is keeping mobile (as much as possible). It is so tempting when we have a rare "good" day to feel like rushing out and doing too much - I am so guilty of this! But the resulting pain flare ups afterwards and subsequent days spent recovering are dangerous. Why? Because people with hypermobility have faulty collagen in our joints, this means the joints are more unstable. The only way we can stabilize our joints is with our muscles/tendons, therefore we cannot afford periods of immobility while we rest/recover. Even just a few days sitting or lying because we are experiencing huge amounts of pain is damaging and giving an even bigger mountain to climb to regain strength afterwards. It is a huge slippery slope, and one that is very, very hard to stop.

Once again the late diagnosis' of this condition causes more problems for us. Many EDSers have had injuries and various aches and pains most of our lives, before diagnosis we are told by well meaning GP's, Consultants, physios etc to rest and take painkillers. This may help the rest of the population without this condition, but it is damaging for us. After years and years of living this vicious cycle of "boom n' bust" (activity and non-activity) the consequences are life changing for many people with EDS. I consider myself lucky, there are people with far worse mobility problems than me. Personally, I'm pretty sure that if I had known about my condition years ago and taken the steps I am now to manage it, I wouldn't need a walking stick to do the school run or a mobility scooter to enable me to take the kids out for the day.

Specialist physio advice to manage this condition is to follow a graduated rehab programme. It is a long and slow process and a life-long commitment if I am to fightback and keep my mobility. To start off my physio is concentrating on correcting issues with my core strength and posture (very common areas of weakness for people with hypermobility), then we will gradually move to other joints.

In order to help me pace myself I now have a "baseline step count" for each day. I have been using a Fitbit to count my steps https://www.fitbit.com/uk for the past 4 weeks and recorded them daily. It is really clear to see the "boom n'bust" cycle - on good days I've managed to do 6,000 steps (yeah I know 6k doesn't sound a lot does it!!), then for the next 3-6 days afterwards I have only been able to do 2,500 while I rest and recover! A perfect illustration of what I described above. My physio helped me to use these step counts to help me calculate my baseline - this will be the minimum number of steps I HAVE to do EVERY day as part of my rehab programme. To do this you need to work out your average number of steps over a 4 week period, then calculate 80% of this average - the answer is your "Baseline Step Count".

My baseline step count is 4,500 - gosh writing it down feels so silly, everyone around me is aiming for 10k plus every day. My goal each day is to do a minimum of 4,500 steps but NO MORE than 5,500! As well as this I have specific physio exercises to do each day. Each week I work out my Pacing Schedule, to include everything I need / want to do.  My Pacing Schedule has to include everything from having a shower, walking the dog, all my numerous appointments, physio, hobbies, socializing etc. The most strenuous activities are colour coded "Red" and I mustn't have more than 1 red activity each day. Each red activity should be followed by a "Green" (easy/gentle) activity to allow time to rest. Other activities that are moderate are colour coded Orange.

Physio for people with hypermobility needs to be different to others. Most people can get by in life with general health and fitness from eating well and doing general exercise / being active. People with hypermobility need the same but also need specific strength around each joint to stabilize it. As well as this, people with hypermobility need to learn what the correct ("normal") range of movement is for each joint - this is very difficult to learn, once again we are not just trying to re-train the muscle memory in one joint not to hyperextend - we are doing this for our whole body!!

People with EDS (and other chronic health conditions like Fibromyalgia, ME, CFS) experience other symptoms such as chronic fatigue, migraines etc and managing these alongside the joint pain and other symptoms is very important too. There is a really good analogy that people with chronic illness use to explain to other people what it is like living each day only having a limited amount of energy to do everything they need to do - it's called the Spoon Theory http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and is well worth a read!

So yes I am disabled! Do I look disabled? Well sometimes I guess I do, if you see me using my walking stick or mobility scooter it makes my disability more obvious. Other times it isn't obvious, it's invisible, but the disability hasn't gone away and I haven't been miraculously cured.

I want to spread awareness of EDS / Hypermobility so that other people understand what I (& millions of others) are going through. We are not being lazy using a mobility scooter, we are not faking it, we are managing our condition the best way we can. If you see me out walking my dog one day, please don't assume I am fine, please consider that I am desperately fighting the pain to ensure I do my physio to keep my mobility. If you see me using my mobility scooter please don't think I am lazy, please consider that I am desperately trying to keep some kind of normality for my children and take them out for the day.

EDS is a variable disability, yes we are disabled, but maybe a better description is "Differently Abled" - we can do the things other people do, we want to maintain our social lives and hobbies, we just need support, understanding, some allowances made and some flexibility so that we can continue our fight against this challenging condition.

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Understanding Autism Spectrum Disorder - Lets Crush The Stereotypes

Autism is something that is close to my heart, my little boy was diagnosed last year. There are so many stereotypes surrounding Autism, even amongst medical professionals who are involved in assessing and diagnosing ASD. I hope that this blog post goes some way to helping spread awareness and understanding to help make his life (& ours!) a little easier.


I recently came across this fantastic visual which perfectly explains what the Autistic Spectrum actually is!


http://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/


This visual should definitely be shared - if only everyone had this understanding; I'm sure there would be a greater acceptance of Autism amongst adults and children.


When my son received his diagnosis of Autism Spectrum Disorder we asked the Paediatrician where she would place him on the Spectrum. Naively, we assumed she would say he was "high-functioning" towards the top end of the linear spectrum - but she didn't, we were told he has "Moderate Autism" due to his significant social communication and sensory processing difficulties and that she would place him somewhere in the middle of the stereotypical linear Spectrum. Almost a year later, we now have a better understanding of the Spectrum and realise that it isn't linear at all! We can clearly see that our sons numerous strengths and significant difficulties do indeed place him at various points on THIS Spectrum ... and his strengths/difficulties can move around within this almost constantly. 

I would love for people to accept and understand that my childs' needs vary depending on the environment and other contributing factors. Just because he can cope in a restaurant one day, really doesn't mean he will cope in the same restaurant a few days later. He could have had a difficult day at school learning something new or following a different routine, his anxiety levels could be very high about something totally unrelated to going in the restaurant; or the restaurant could be particularly busy or noisy - all these factors (& many more!) contribute to how my child copes with a situation.


Autism is an ever-changing thing. My son can go several days, even a couple of weeks where his Autism isn't particularly obvious. Whilst we were going through the period of assessment, prior to his diagnosis I would find myself doubting whether there was in fact anything "wrong" - perhaps it was all in my head?! Then something would happen, we would have a family day out and he would struggle to cope in the noise / crowds, our routine might change at home unexpectedly, at school he may change topic and learn something new or he may struggle in a social situation and then BANG! There it is, high anxiety levels, sensory overload, erratic and seemingly irrational behaviour and extreme reactions to things ... once again his Autism is completely obvious once more, no, I definitely wasn't imagining it!


Autism is always present, it cannot be cured, it is a life-long neurological condition. But careful planning, early intervention and on-going support really does help to "manage" the condition. We know now that with plenty of preparation, some social stories or visual aids our son can have a go at most things and do fantastically! We aren't being over protective, over anxious parents as some people seem to think we are - trust us, we aren't doing all this just for the fun of it, if he didn't need it we wouldn't do it! We know the types of situations that are usually "flash-points" and every day is a balancing act of preparation and routine ... whilst also gently teaching him that things do change, the world isn't always black and white, and that "different" can be ok.


As a family we have learnt so much in the past 5+ years as we've discovered our sons' needs, and there is still so much to learn as he grows up. It is constant, extremely challenging and an emotional rollercoaster at times but the rewards we get are massive and the pride we feel when we see him achieve something that has been tricky for him is immense.


Thanks for reading!
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For People Who Don't Have Ehlers Danlos ... What Is It Like? How Does It Affect You?

I've just found this brilliant letter "To someone who doesn't have Ehlers Danlos Syndrome". I didn't write it and I think it has been shared widely online already, but it really sums up how I feel ... and how many others with the condition feel. I think just reading this will help to spread awareness and understanding - please read it and share ...


Thanks for reading!
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Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

... These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.

Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and instability etc from EDS moves around. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. EDS does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from EDS; it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.

As you can see EDS really sucks...

Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you to understand me.

Written by Michael (aka Deaderpool)"

A Life With EDS

My name is Claire, I'm a 37 year old, married, mum of two. After years of numerous referrals, appointments and tests; doctors have always been a bit baffled by me. Now, after many years struggling, but not knowing why, I now have a piece of paper with a diagnosis written on it - Ehlers Danlos Syndrome. So there it is in black and white, but what happens next?  


After my diagnosis I had loads of questions buzzing around in my head - I spent literally days online, researching EDS, trying find out more. I strongly believe there are many, many people worldwide that are suffering with EDS symptoms that remain undiagnosed. Sadly it seems pot luck whether people are lucky enough to see Medical Professionals who actually understand EDS and correctly diagnose it.


Since my diagnosis (and recent, rapid, deterioration physically), I decided that I need to embrace this condition - it isn't going to go away, I'm not going to get better, I can't be cured, I have this for life!


So in a bid to be more positive about the future, and focus on what I can do, instead of everything I can no longer do, I set up Zebra Stitches! I have started making a variety of homemade bunting and home decor accessories to sell online (you can visit my store and see what I've been making here at www.etsy.com/uk/shop/zebrastitchescrafts). 


I've decided to embrace EDS, to learn to manage the condition the best I can and to try and build a positive future for myself (and my family) despite the challenges I face now and will face in the months and years ahead. So join me as I develop my sewing and crafting skills, as well as raising awareness of EDS and also Autism and ADHD which are in my family too.


You can also find me on ...
Facebook https://facebook.com/zebrastitches
Instagram https://www.instagram.com/zebrastitchescrafts
Twitter https://twitter.com/zebrastitches00


Thanks for reading!
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Why The Zebra?