Tag Archives: crutches

Mobility Aids

When I was almost totally bedridden with M.E. going out of the house was torture.  Just being upright made me feel like I was dying and, once outside, the light, sounds and smells of the outside world were an actual assault on my very poorly brain.   The energy needed simply to get dressed had almost seen me off, leaving me with no reserves, so when I absolutely had to leave the house I used a wheelchair.

The experience had both positives and negatives.  Positive in the fact that, without the wheelchair, I was completely housebound but negative in the fact that I had no independence and was at the mercy of whoever was pushing me.  They often went at a pace I wasn’t comfortable with and stopped to chat to people they knew but I didn’t.  On the very rare occasions I went to the shops I couldn’t see any item on a shelf higher than waist height (a particular problem in supermarkets) and found being in a wheelchair a very isolating experience as it’s almost impossible to chat to whoever you’re with.  The reaction of the public was to be expected I guess.  Many people talked to my Carer, treating me like I was invisible, and the rest talked to me like I was mentally deficient.  Even my Mum, who was usually the pusher, at times treated me like a child.  I remember being in B&Q once and we were struggling to find an item so she said to me in a very loud voice “ask the nice gentleman over there Jak” like I was five and being encouraged to speak to strangers.  I could have throttled her.

My GP, otherwise supportive, didn’t want me using a wheelchair.  I was capable of walking so in her eyes I should just crack on and do it.  She, of course, had no idea the effects walking had on me or the hours, sometimes days if not weeks, afterwards where I lay on my bed feeling like I’d had 5 rounds of chemotherapy – puking, shaking, unable to think or speak and so weak I could barely breathe or open my eyelids.  She warned me that by using a wheelchair to get around I’d “go off my legs entirely”, not understanding that I was virtually “off my legs entirely” to start with hence the need for the mobility aid!  She wasn’t the one who had to live with my disease, or the consequences of walking around, I was so I promptly ignored her.

I have to admit using a wheelchair was a necessary evil but not an experience I want to repeat any time soon, so when I started to see some improvement in my M.E. I bought myself a small mobility scooter.  Now I could go out on my own, whenever I liked, at a pace I liked and to wherever I liked and it was brilliant.  It was obvious to the public I was mentally competent so they talked to me like a regular grown up and I found that other scooter users waved or stopped for a chat, albeit most of them were over 70.  The only negative was when I got off my scooter, for example if a shop wasn’t scooter accessible or if I needed to use the public toilets.  If you use mobility aids many people expect you to be paralysed or totally unable to walk, so I did get some peculiar looks and snidey comments about “miraculous recoveries” to which I’d raise an eyebrow and ask politely “is there a problem?”  Once confronted most people backed down and scuttled off.

Portable scooter which goes in the boot of the car (if you have someone to lift it in for you!)

My cousin once asked me if I was embarrassed at having to use a scooter, a question which surprised me.  For a start, without the scooter I couldn’t leave the house so to me it was absolutely fabulous.  And for another, what was it I was supposed to be ashamed about, exactly?  I hadn’t made myself sick.  Hadn’t robbed anyone.  Wasn’t a druggie or a dropout.  Hadn’t committed murder.  My body was poorly and didn’t function as well as it might – I’m still flummoxed as to where the shame is in that.  My view is that I’m lucky enough to live in a country where mobility aids are, for those who can afford them, accessible and I’m grateful for the fact.  I’m sure there are a lot of disabled people living in Africa who would kill to use a mobility scooter to get around.

Now my M.E. is at a moderate, rather than severe, level I do walk whenever I feel well enough.  I kind’ve understand where my GP was coming from and agree that, if it doesn’t make your condition worse, you should try to walk if you can.  It keeps muscles strong, heart and lungs healthy and helps control weight, alongside all the emotional and psychological benefits.  I am so grateful there are now days I can walk for 10 or 15 minutes down by the river with Bertie and I love and appreciate every second.  However, there are also days I am too exhausted, in too much pain from my Ehlers-Danlos, or simply feel too ill to walk, so still regularly use my mobility scooter and am grateful to do so.

Having EDS means I live with chronic pain and frequent injuries.  My back and hips are particularly badly affected and I have issues with my sacroiliac (SI) joint.  When I stand and walk the pressure on my SI joint, lower back and hips can be incredibly painful and there are times I need to take the pressure off the lower half of my body by using crutches.  I fucking hate my crutches.  The NHS ones were useless, heavy and hurt my arms, wrists, elbows and shoulders, so I bought some Smart Crutches which, if you have to use crutches, are as good as it gets.  But they’re still a pain in the arse.  Trying to manoeuvre steps and stairs on crutches is a mare and, if you use them around the house, they just get in the goddamn way.  What the hell do you do with your crutches when you’re making a brew, for example, or a meal.  Doing the washing up or having a pee?  They just constantly get in the road and, having leaned them against the kitchen counter while I put the kettle on, inevitably end up falling on the floor.  I should probably use my crutches more than I do but unless I’m absolutely desperate I can’t stand the hassle.  If I had the money, and my house was suitable (which it’s not) I’d much rather use an electric wheelchair on my bad days than crutches, but at the mo it’s just not an option.

I put off using mobility aids for years because of a lack of knowledge about my diseases, how to manage pain and effectively conserve energy.  I thought using disability equipment was somehow giving in when in reality I was just punishing myself unnecessarily.  These days I’m much better at knowing my energy limitations, recognizing if I’m having a particularly bad day or am injured, and altering my mobility needs to suit.  I’m grateful I have access to aids which help my daily life and would actually use more, not less, if I could afford to.

All terrain Class 3 road scooter.

Weekly roundup

I’ve had one of those weeks where life has seemed tough.  Every joint is hurting, I’ve struggled to sleep for over 3 months now and am beyond exhausted, I’ve had a bad run of migraines one of which kept me up all night on Thurs vomiting and I had a mast cell reaction on Fri night which now means I’m petrified to take my H2 anti-histamine.  So I’ve had a break from it, and the anxiety, and now have rampant reflux which is simply agony and my cough is back so acid is obviously spilling into my lungs.  After 20 years of living with these kinds of symptoms, and more, every second of every day, I’m kinda tired of the whole thing.

I’m not getting on very well with my Smart crutches.  I ideally wanted a black pair, but after reading the blurb realized I needed the smaller crutches with the shorter leg and arm rest lengths and they only come in red, blue and grey.  I settled for grey, which are actually still very smart with black stripes, and they are definitely much lighter and more user friendly than the NHS gutter crutches.  However, the cuff which goes round your arms is massive and as I walk along my arms just fall out of them.  Not sure why they’ve made crutches for tiny people and put a standard cuff on them?  I’ve kept meaning to ring the company for advice, but it’s just another chore to add to my list and I’ve not gotten around to it yet.  I think I’ll try sticking some foam inside to pad the cuff out and make it smaller (I don’t want to use any kind of tie because it makes them impossible to put on or take off on your own).

Monday I took my Dad 30 miles to our local hospital for a follow-up endoscopy (he’s had severe stomach problems for years).  We got there at 1pm, his endoscopy was due at 1.30pm, it takes about 90 minutes, so we thought we’d be home about 4pm.  Think again.  We sat in the packed, boiling hot, waiting room on rock hard chairs until 2.45pm when they finally called his name.  I told the nurse I was popping into the city to do some Xmas shopping for my Mum and would be back in 90 minutes.  I got back to the hospital dead on time to find my Dad, stony faced, sitting in the waiting room.  Thinking he’d finished early and had been waiting for me to pick him up I apologized, but he said “oh, don’t worry about it – I haven’t had the damned thing yet!”.

By that stage he’d been sat there for nearly 3 hours.  I pressed the buzzer to the theatre and asked a nurse what was happening.  Apparently there’d been several emergencies in that afternoon, which I understand, but not a single member of staff had been out to the waiting room to tell any of the patients what was happening.  They’d just left them there.  My Dad was told not to eat or drink anything for 6 hours before the procedure.  He wasn’t up in time to have an early breakfast, so hadn’t had a bite since his supper at 5.30pm the night before, nearly 24 hours earlier.  Good job he’s not diabetic.  By the time he had the procedure done and we arrived home it was 6.30pm – we were both totally fed up and my Dad was absolutely ravenous.

The week has not been a total right-off however.  As regular readers know, my Mum has been coughing up blood again and had an emergency CT scan last Tuesday.  We got the results and there has been no significant change since her last scan, so that was a massive relief.  We still don’t know why she’s coughing up blood, but it has happened before, went on for 3 months, then just stopped.  I’m convinced she has Ehlers-Danlos and has very fragile capillaries and it could just be that, because of her severe recent chest infection and all the coughing she did, she’s damaged some of them (is that even possible?).  She also has horrendous nose bleeds for no reason anyone can fathom and which can happen in the middle of the night while she’s sleeping.  Anyway, they’ve made her an appt to see a pulmonary specialist in Feb.  Not sure why, as there’s nothing anyone can do about her lungs, but we’ll go anyway and see what they say.

My other big news of the week is that the results of my second Camera Club competition were announced on Wednesday.  It was on a set theme of flowers, so I submitted 2 very different pictures: one of some poppy seed heads taken in my garden, and one of some wild poppies in a rape field taken on a walk with Bertie early one morning.  To my amazement the seed photo won me 2nd place and the poppy flowers won me 1st!  As I’d never taken a “proper” photo in my life until 3 years ago and am completely self-taught (which is code for ‘haven’t a clue what I’m doing’) I’m always gob-smacked that seasoned photographers think my pictures are good in any way!

1st place

1st place

2nd place

2nd place

Right, it’s now 8.30am and I really must get up and have some breakfast.  My dog walker doesn’t come on weekends, so I have to take Bertie out at 9am which, with the new scooter, is no bother.  I always wake between 6am-7am, regardless how little sleep I’ve had, and do nearly all my blog posts at this early time of day as my brain works at its best just after I’ve woken up.  I know this totally flies in the face of most people with M.E.’s experience, where their brains simply don’t work in the morning, but I’ve always been a Lark and do all my paperwork before 11am because after that my brain is simply not capable!

Weekly roundup

It’s been a bit of a tough week.  I’ve been icing my hip twice a day, rubbing in lashings of Ibulieve gel and doing zero exercise………but my hips have actually gotten worse not better.  I’m gutted.  I’m now in constant pain and can’t find a single position in bed which is comfortable.  Consequently I’m sleeping even worse than I was already, which means I’m not just tired I’m exhausted and now my ME is playing up so today I am confined to bed.

The NHS gutter crutches are simply unusable.  They are so heavy and cumbersome I feel like I’ve spent an hour weight-lifting in the gym every time I use them.  So I’ve bitten the bullet and ordered some Smart Crutches (in black, so they go with every outfit 😉 ) and am just waiting for them to arrive.

The physio wanted me to do some hydrotherapy but it involves a 60 mile round trip which isn’t physically do-able every week in winter for the next god knows how many months.  With my dodgy immune system I’m also not keen on using a hospital pool!  My neighbour has some mild back issues and also fancies swimming but doesn’t fancy a snot, pee & germ infected public pool so this weekend we’ve been investigating hiring a private heated indoor pool and having ourselves a swim session pour deux.  We’ve managed to find one locally which rents out at £20 ($31) an hour, so we’re hoping to try that next week.  The last time I tried swimming it made me feel really MEish and fluey, but I admit it’s been 18 years so things might have changed!  I’ll give it a go and see how I get on (obviously starting with just a few laps and working up).

Both my Mum and my dog are also ill (Mum is coughing up blood again and Bertie is lame) so we’re all a bit miserable.

I’ve been investigating upgrading my current little mobility scooter to one that will go over much rougher terrain.  There’s a 2nd hand one going at my local Disability centre and, while it’s still outrageously expensive at £1,000 ($1,600) and would decimate my meagre savings it’s really cheap compared to a new one (cost £3,000+ or $4,800).  It would mean I could take Bertie out off-lead, and do my photography, on my usual public footpaths through woods and fields rather than being confined to the road with Bert on the lead as I currently am.  It’s a huge decision for me financially and I’m still undecided as to what to do.  One of the biggest things putting me off is that the scooter is only shower, not water, proof.  It’s bloody ridiculous.  Are disabled people not supposed to go out when it’s wet (where I live it rains 300 days out of every 365!)?  I don’t understand why the console on a scooter can’t be made waterproof like the console on a motorbike (this particular scooter was designed with the Harley Davidson motorbike in mind).  With my current scooter I either wear a large waterproof cape draped over me and the scooter (which makes picking up dog poop a total pain in the backside and one of these days when it’s windy I’m going to take off like Mary Poppins) or I place a bin liner over the console to keep it dry, but the way the Sport Rider is designed placing a bag over the handlebars would be a nightmare.  I’m ringing the mobility place again today for another chat.

Mast cell-wise my large outbreak of butt hives are finally on the wane, but I had a mast cell reaction last night at about 9.30pm for no reason I could fathom (increased blood pressure and heart rate, anxiety, muscle spasms, nausea, buzzy nerves, brain freeze – the usual suspects).  It could have been a late reaction to my dinner (eaten 2 hours earlier) or my H2 tablet (taken 90 minutes earlier), the fact I’m ovulating or it could be something else entirely.  I’m obviously still quite mast cell-y though and have been for about 2 months now (ever since my hip issue started).

And to top off an other-wise crappy week, last night was the last episode in the current series of Downton Abbey *sob* 😉 .

Despite spending this entire post whinging, life is not all doom and gloom.  I do have some exciting news but will save it for later in the week!



Greater Trochanteric pain

Last Tuesday I had a physiotherapy appointment regarding my hip pain.  My physio doesn’t have a huge amount of experience with Ehlers-Danlos Syndrome (no-one in the entire north of England does) but she is a specialist senior Rheumatology physio and does have several other EDS patients.  I saw her on and off for a year in 2013 and, although we didn’t make huge progress as my ME makes any kind of exercise almost impossible, she was hugely sympathetic and understanding of my situation, listened to me and didn’t force me to do anything which would make my ME worse.  If only health professionals knew that this kind of attitude helps as much as actually treating the problem!

The pain started about 2 months ago with an ache deep in my right socket joint where my leg bone meets my hip and a distinct sub-luxing clicking sound if I moved my legs apart.  Eight weeks on it’s a constant deep pain in the joint, hot burning muscular pain down to my knee, stinging shooting nerve pain down to my knee (both of which keep me awake at night), pain in my SI joint, pain along the top of my pelvic bone and, just so’s my left hip joint doesn’t feel left out, it’s now started to hurt too.  Super!

My GP guessed, correctly, that it was Greater Trochanteric pain syndrome (formerly known as GT bursitis) and my physio agrees.  Which, in some ways is great, as it means there’s no actual problem with the hip joint, but GT pain is apparently a bitch to treat and can be very troublesome.  Tell me something I don’t know!

I can’t have many of the treatments which a ‘normal’ person would for this condition.  I can’t risk steroid injections, as I’ve reacted to oral steroids in the past due to my Mast Cell Disease.  Ditto with ultrasound treatment (weird, I know!) and acupuncture.  So it’s down to the basics:

  • Ice, 3 times a day (as I type this sitting up in my bed I’m having the equivalent of brain freeze in my butt!)
  • Ibuleve (ibuprofen) gel every 4 hours (I can tolerate topical pain relief, just not oral) to reduce the inflammation
  • Rest (for a whole month – somebody shoot me 😉 )
  • Crutches.   I’ve had to have gutter crutches which take your weight through your whole forearm, as regular crutches would totally bugger up my already weak and highlyhypermobile wrists and shoulders.

    Photo of gutter crutches

    Ignore my jumper – it’s long and usually down over the TENS machine clipped to my wasit and SI belts but I’ve hitched it up to show you the full ensemble!

  • Bracing – I’ve bought another second-hand SI belt off Ebay and am using that slung slightly lower down around my hips to stop the joint sub-luxing.
  • My trusty TENS machine, which won’t help the joint heal but does take the edge off the pain.

I have to go back in a month with my progress.  It’s been nearly a week now of not doing my usual activities and I have to say……………the pain is worse than ever 😦

The day after my physio appointment my Dad had his hernia operation.  He’s doing fantastically well and you would never know he’s had surgery, other than the fact he can’t walk far or drive for the next 2 weeks.

Due to all of the above I didn’t make the EDS conference in Birmingham.  I can barely sit, stand or lie due to my hip and pelvic pain so there’s no way I’d be able to sit for nearly 3 hours in a cramped train seat, then all day in hard conference chairs (n fact, the mere thought makes me wince), plus I didn’t feel I could leave my dog with my parents as neither of them are able to take him out (my Dad’s surgery wasn’t on the cards when I booked my conference tickets).  I’m gutted I didn’t get to meet any of the people I’d planned to but at least I won’t miss out on the lectures as EDS UK are putting them up in the member’s section of their website soon.  I’ll let you know if I discover anything new once I’ve seen them, particularly the talk from Dr Seneviratne on Mast Cell Disease in Ehlers-Danlos.

For anyone else experiencing hip pain, there are some really good slides from the Ehlers-Danlos National Foundation’s 2013 conference online here.

On a totally different topic, a group of doctors at Beth Israel Deaconess Medical Center would like to understand the bowel and stomach issues that might affect patients with inherited connective tissue disorders.  They have put together a survey which will take about 25 minutes to complete (it’s very easy) and I would encourage anyone with a confirmed diagnosis of Ehlers-Danlos Syndrome or Benign Joint Hypermobility Syndrome to take part: