My physiotherapist is lovely. No, really, she is. Funny and amusing and everything.
I still walked out of the appointment with a good case of bleh though.
We sat down and she asked about which joints were affected. I may have laughed a little bit and asked where she wanted me to start.
From the top.
Okay.
So, I started from the top and worked my way down. By the time I’d listed ten or so joints she was looking overwhelmed and I hadn’t even made it down my arms! She’d run out of room on her sheet by the time I got to my feet.
I’m pretty sure I still forgot things.
She took a deep breath and I could almost see her brain ticking over as she realised that this was a much bigger job than she thought it was going to be.
I could have told her that.
She had me walk along the hallway while she watched. My ankles/knees/hips obliged me nicely by clicking loudly with every step.
You click lots.
I know.
Twist for me like this. Now this. Okay, this? And now this. Hmmmm. Wow, you really are quite flexible.
I know.
Then we laughed.
Because dude. I know.
We fitted a wrist brace, as well as a knee brace. I couldn’t afford the knee brace today, so we settled on more support bandages. They’re doing their job well enough, so that will do for now. I need to think about ankle braces, because really, I’m sick of being tipped sideways as my ankle rolls. There is nothing more sexy that a sudden stumble as you walk down the steps [across the room, through the supermarket…]. Suggestions? Anyone? (BendyGirl, Carol, Achelois, I’m looking to you for suggestions)
Next week we’ll be looking at half an hour of core stability exercises and half an hour of Pilate’s.
But I’m still bleh.
Maybe because while she was lovely, she didn’t really seem to have any advice or ideas about what to do to minimise long term impact. I know that she is more used to working with sporting injuries than long term floppiness, but still.
[I know that today was just an initial consult and that she might spend the next week working out a Very Big Plan. I know this.]
It just would have been nice to walk into there and find a physio who had a definite plan in mind already. It’s great that I am so active in my own medical care, but sometimes it’s also exhausting. I’d love to pass the reins to an expert, if only for a little while.
Although I’m still a little amused at just how her face looked after those first ten joints with issues still hadn’t made it down past my hands.
And right now?
I’m researching just what kind of dye I need to dye an icky tan coloured wrist brace a decent colour and also what colour I want.
Feel free to input suggestions.
Black goes with everything. It’s a shame they don’t come in white instead of tan – it’d give you a lot more options.
You might want to look into a colour remover before you dye it so the tan colour doesn’t affect the dye you put on it. It’d be awful to end up with a darker shade of brown instead of the colour you want.
What about instead of dying the brace, making up some funky covers in different fabulous fabrics? Then you could wash them easily, which would help prolong the life of your brace, and you could change the cover according to your mood? Do you know anyone who’s a good sewer? You could probably do something cool with knitting too….or I have these great wrist warmers made from a recycled wool sweater which might work and would be easy to make. Take a look at etsy for thousands of ideas:
http://www.etsy.com/search_results.php?search_type=handmade&search_query=wrist+warmers&order=date_desc&ship_to=&page=1
Hugs.
Badness, I don’t think knitted would work, it would end up too bulky. A cover though, that’s not a bad idea!
Edit: Those knitted wrist covers on Etsy are lovely though. Maybe it wouldn’t be too bulky? I don’t know.
Sorry you are facing more difficulties Veronica
Keep your sense of humour they can’t take that away , seriously is helps on bad days when you are facing long term plans to manage your health.
I can’t help on the dyeing issue maybe ask Blossom on twitter …she is a crafting whizz.
Thank goodness for laughter…and black dye, that’ll get rid of that funky tan.
I’m not a big fan of braces so I’m perhaps not the right person to ask….But,
Wrist braces are a must for when you’re driving. Despite having been told by a few doctors (though not the EDS specialists) I should be wearing them full time it’s not practical & is also bad for the joint as the muscle tissue will just waste away. Wear for a few days for short term support if something’s dislocated or injured especially badly, apart from that don’t bother. Wrist braces are evil as they don’t allow you to type/use keyboard/mouse properly. It’s legal in the UK to drive with them on so long as you can grip the wheel properly with your hand/thumb.
Lots of people rave about finger braces but frankly I can’t see the point, if you are like me (and sadly Von I think you are-sorry!) you’ll just find a whole other direction to dislocate in anyway.
Knee braces, again not sure I see the point. I personally find if I dislocate I’ll end up on the floor anyway, a brace just means disturbing our natural balance (there is some honest!) If you dislocate naturally, you’ll fall naturally, & we floppies tend to be a bit like toddlers in that sense, we’re floppy enough to protect ourselves to a degree from the fall. However, when something not bendy and floppy is put in the way…forget it, you’ll fall much harder & probably in an unnatural position.
As for shoulder or hip braces. Waste of time! Unless you have developed specialist problems in your hip/spine area like say Ms Ordinaree has then leave well alone. Apart from anything else, you’ll just dislocate getting in and out of them and probably inside them
Actually now I’ve written that, the best advice anyone can give a bendy person is to stay bendy. Avoid surgery at all costs (only exception being if it’s life threatening or if you KNOW the soft tissue is torn) Tightening surgery will only screw you up.
The only thing that will really help is life long core stabilising exercise. That and the waccy baccy 😉
Whilst braces aren’t beneficial things like a good pair of custom made orthotics in your shoes will help. They can be very expensive, but worth paying for. Correcting your ankle/foot position with the brace means correcting your knee, hip and spine position. It takes a while to get used to and you have to build up use very gradually but they do help. We’re very, very fortunate here to have the NHS as that allows things like these orthotics to be customised over repeat visits, something which would be prohibitively expensive in a private system
If you find a way of dying the tan braces black please let me know? The advantage of tan is that they aren’t very noticeable, and you’ll want to throw them in the machine enough cos they get mucky! Just take the metal bits out & lob into one of those net lingerie type bags, having velcro’ed them back to front. You also probably won’t wear them enough long term to bother about the colour as you can’t really DO anything in them. It is possible to get these huge support brace type things for overnight. DOn’t bother! They are expensive & you won’t use them. They are actually incredibly comfortable & they work…but take a while to get into, even with help & you won’t even be able to go to the loo or lift a cup of water with them on, forget pick up a baby/feed/change them
It might be worth learning how to strap your own joints though (get physio to teach Nathan or Kim) Your skin WILL tear from the tape (it’s tearing not allergy) but if you put a very soft tape underneath the strong sports type tape it’ll prevent that & give support. Avoid micropore as you’ll tear.Best tape I know to prevent that is called Mefix in the UK.
The advantage of taping is that you can’t do it long term so avoid too much joint degeneration & that it’ll provide a bit of support but unlike bracing allow you to move more normally.
That doesn’t sound very positive I don’t think, but ultimately I’ve learnt that all these braces etc are nothing more than a distraction from the real issue which is daily physio. Over time that’s easy to build into daily life & more effective than anything else. Having noticed you mention panadol you might want to think about better pain relief, I’m not sure how it impacts on breast feeding but a specialist will.
Good luck my dear! BG Xxx
I’m with badness. some sort of cover or something, bling it up differently for each occasion.
I hear you on the wishing someone else could manage it for once. I am exhausted by asking for help and receiving really nothing of value. You will get benefit from what she has to offer in the long term but wouldn’t it be lovely if someone had a fabbo magic solution – or even the same solution between health care professionals! They often have a very different take from one physio to the next, which, you know, really helps!
Will keep my fingers crossed that your physio is brainstorming to come up with a Big Plan.
Glad you’ve got BG around to keep you right – see, yet another reason you should move over to the UK! 😛
((hugs))
You just reminded me of when my ankles used to roll. They were so bad that I was used to tripping all the time and other people always went to catch me. I have now realised that it hasn’t happened to me in years, actually I cant remember the last time it happened. I wonder why they rolled and dont anymore? Strange.
The braces would be annoying but they will save your joints. Can all that clicking bring on arthritis or osteoperosis? (scuse the bad spelling) Do whatever you can to save them.
I’d tie dye it!
I click too
I’m so sorry you got stuck spoon-feeding your doctor. I find that frustrating and upsetting as well. I mean, as much as I don’t want something to be *really* wrong with me, I hate leaving without knowing there’s a course of action that that will lead to a solution. I hate questioning myself with I know something is wrong. I really hope she comes up with some master plan to unveil for you at the next session. (One can hope, right?)
I don’t think anyone anywhere has ever left a medical office not feeling some ‘bleh’.
You could do a series of nude shots wearing nothing but the supports?
Oh duh, Pilate’s! I have no idea why I didn’t think to tell you about core muscle strengthening!
It will help you lots. When your muscles support you as opposed to your joints doing it all it can help with all sorts of things. Witchypoo is having good results from her similar therapies.
My first thought was that purple seems lovely for you.
I wish you could find a specialist to help you – even if your physio is capable, feeling as though someone is in control and has a plan for you would probably go a long way to helping your mental anguish, too.
Thinking of you.
Ruby or Aubergine. My personal preference, don’t feel you have to!
I’m sure she is working on a master plan – fingers crossed (mine, not yours) – and if she isn’t then you should definitely take Marilyn’s advice and move to the uk.
I’m partial to flourescent green with purple dots. Or vice-versa!
I have no good suggestions so I offer nothing but my sincere best wishes… just to let ya know I’m reading and listening. :]
My partner – who has a tendency to roll his ankles – likes to wear hiking boots because of the ankle support they provide. He used to wear 14 hole Doc Martins for the same reason, but has given them up because of the time it takes to get the damn things on and off.
I have found that orthotics from a podiatrist help a lot – but I’m only a bit bendy.
Oh BG I am so glad you wrote the post I would have written! No I am not lazy I am computerless at present and only have this one for a moment or two!
I agree with a lot that BG has put, whilst I do have braces for most of me I have thin EDS skin and unless they are lined with sheepskin or similar am left cut and bruised with any more than short term wear. I have been told I should wear rigid splints on my thumbs, wrists, splints at all times but find this not only not to be practical but lack of use can increase pain dislocation etc. I have benefited from night splints custom made to hold my hands, wrists thumbs elbows etc in a supine? position and prevent them curling up so much that they all dislocate in my sleep. This is somewhat of a passion killer. The special plasticiniy stuff I cannot remember the name of is good to squeeze to help muscle strength. I got nowhere with the elastic band strengthening exercises as even the least tensioned caused dislocations.
A gait analysis by a podiatrist (a good one will have computerized equipment to assist) and custom orthotics I would recommend although Professor G I know is not a fan of the hard orthotic as often it seems to cause more problems than it is worth. Decent orthotics regularly assessed for suitability may help with misalignments which may also cause knee, hip lower back shoulder and even neck pain. Often the hypermobile crumple up as the sheer effort of holding everything together may be exhausting, so long term core stabilising exercise will help posture and support from the inside out.
I understand that for the moment bracing is a viable way to keep together whilst you have the intensity of looking after your little ones. But I like BG am not a fan for long term everyday use due to the use it or lose it philosophy. I have to wear supportive shoes but they cannot be to heavy as the weight pulls my knees straight out! Whilst you are at the beginning of the journey to stabilise your muscles as much as they are able to be I would understand you wearing a brace for wherever is appropriate when you are needing to be more active and hands on with the children. Injury prevention is going to be a high priority and the bending and lifting is hard I know on your body. Learning to parent differently IS hard I know but it will get easier as the children become more independent.
Pacing as much as you are able will be your friend for life – you may be laughing now Veronica at me but keeping a diary of activity even for a week may well bring up a pattern of pain that follows a course the most bizarre of activity or chore being the culprit. Not doing ‘that’ one every day may help with pain management. I know you can’t not parent the kids but take every opportunity to give yourself a breather – As my kids gained more attention spans made up stories on walks however small gave a time to rest! Gazing at clouds to find pictures another hidden pacing thing. However I digress.
If you find the braces, supports help for the moment go for it but remember as BG says so well its a temporary fix. My daughter did an ankle rehab course which turned into a nightmare as it was designed for non-collagen deficient and actually caused more problems so I would not recommend group physiotherapy sessions unless the group is small and all have EDS!
I could go on but I think I have said enough some of which I hope you find helpful. In essence patience is going to be your best friend with physio and pilates as your physio will have to accept that improving your propriception, core stability, posture etc.. could take considerable time. She may have to learn to take advice outside of her comfort zone and I would recommend she read the book on management of EDS for professionals and physiotherapists the proper name of which evades me tonight I am sorry.
I do not favour ring splints I am afraid or surgery unless essential although I know this is subject where much controversy arrives between different countries.
Don’t give up or lose heart though Veronica it is possible to live well with the condition I won’t lie and say the pain will go as that would be a miracle but with support and appropriate therapy some days aren’t so bad, thats what I say anyhow. If at all possible get a cleaner and save your self and strength for other stuff. Its something I didn’t do when the children were small and it was a mistake. Accept help whenever possible and ask for it and don’t feel bad. Often a friend can do somethin you find hard and you can offer something in return that isn’t necessarily physical. Always get the shop assistant to pack the groceries and as the children grow they get to carry chop and muck in. I’m off before I get all pontificaty!
This post may be a little rambly I have had to take strong medication today! Reasons will write on my little old blog if able. Take care Veronica and apology for mega comment!!
I think that fabric covers for your braces are a good idea. Lainy has never had to use braces long term, so I don’t have much to offer here. Her shoulder brace was used for six weeks after surgery and then only occasionally after that.
I don’t think you can categorically rule out surgery as an option – it has worked well for Lainy’s shoulder which no amount of physio could possibly help. How long it will help is another matter, but we’ve almost made it to the 1 year mark without any significant loosening or loss of use.
Wow, lots of helpful information up there ^ for you today. Finding the most comfortable and useful solution for yourself will probably be a bit of a hit and miss affair, but keeping on with your physio will help. Over time she will get to know you and your joints and lots more about EDS too, so a workable balance of exercises and supports can be sorted out. I’d say forget about dying the braces, after many washings the colour will fade and need to be redone. I have the ankle roll thingy too, although rarely, maybe once or twice a year, sometimes my right knee feels funny and I’ll flex it until it clicks, then it’s okay again. 99% sure I don’t have EDS, though i’m sure some core strengthening exercises would help me too with my constant back strain and pain. I’m just too lazy to bother.
ms V!!! Amy poohed in the toilet! how completely cool is that???!!??
I’m sorry the syndrome is acting up so badly…I don’t know much about it…it sounds shit. I was going to ask you if it helped to just ‘be’ with it…but I’m not sure if you’d get what I mean, not minimizing but not fighting it either…this from someone who has learned the hard way that sometimes you have to just let it all ‘be’ I’m sorry it hurts so badly, that would be unbelievably hard with kids….
Great pics my girl..what a fab camera…
Yay for you and Amy for poohing in the toilet. I sincerely hope you find the help you need. ((Hugs))
Fabric glitter glue.
Brings bling to everything, everytime 😉
Thank goodness for the internet, I say! I the things BG told you may be more helpful than an physio!!
Try my wrist brace cover. I have it listed on Etsy, here’s the link:
http://www.etsy.com/view_listing.php?listing_id=27572738
It’s not bulky, it protects your brace and your skin and you can order it in whatever color or pattern you want! Good luck!
I was looking through Google doing research for a blog article, when I found this blog, and while not what I was exactly looking for I found it very amusing and interesting. I also feel sorry for you that your physio wasn’t able to come up with a long term solution just yet but I keep my fingers crossed for you. I agree with the idea of getting cover for your supports, then it can always match your top etc. Thanks Tyra xx
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