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.
x
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