Cat Coasters for Cat Rescue

Cat Coasters for Cat Rescue

Why rescue?cat2

I am a huge advocate of rescuing cats from shelters rather than buying them from breeders or pet shops.  Every type of cat, of every age and every breed are available in a shelter somewhere.  Only want a pedigree kitten?  There will be one, somewhere, in a shelter!  So why spend out hundreds of pounds when shelters are having to put down animals they can’t home? (Though really good shelters have no kill policies except due to severe illness.)

Pretty much every stereotype about shelter cats are untrue.  They’re just as loving and adorable as any other cat out there – and the great thing about shelter cats is the staff/volunteers will want the match to work – so will evaluate the pet to check how they are with other animals, children, or specific people, and what kind of home would suit the cat best.  Some are happy to be left home alone for longer periods of time, others need more attention.  Many like to roam outside, while a few want to stay indoors pets.  They will also flag up if there are any specific health care issues. It means when you take a cat home with you, you can have far more confidence that the pet will work with your personal circumstances, rather than taking a gamble.

Another reason to choose a shelter cat is it will keep more money in your pocket. Having an animal isn’t cheap, but when you pay the fee at the shelter, it usually covers a whole range of costs including neutering/spaying, vaccinations, flea and worm treatment, and the pet should also be micro chipped as well. My local shelter charges a £60 fee which covers all that, yet my vet charges £60 for a spay alone.  What a bargain!

My “rescue” cats

Despite being a huge proponent of rescue animals – none of my three cats are actually from a shelter.  But I didn’t buy them either.  Two were strays that were found in not-so-great situations, and no possible owners came forward after searching.  Even if owners had been located, I wouldn’t have been happy giving them back as they both showed signs of neglect in different ways.  My third cat was a kitten that was dumped with someone who had large dogs, so couldn’t keep them (the original owner asked her to look after the kitten for the weekend, then never came back).

My first cat, Button has come on such a long way.  When I first got him I used to say he was ‘scared of life’ – jumping at every sound, and running away in terror if a man came near him.  It took me a long time to gain his trust, but he’s now the most loving cat, always wanting cuddles and attention.







Bailey, the kitten who was dumped, is full of personality.  He will only come to you when he chooses to, so you feel all the more privileged when he honours you with his presence.  He gives adorable little head nods to people he’s feeling affectionate towards.










Pepper is my little eternal kitten – half the size of Bailey, who is almost half the size of Button!  She’s full of sass, keeping the two boys in line, and constantly begging for treats – and is often found in random places (the bin, a cupboard, a box that’s half the size of her, and so on!)


IMG_2175 (2)










Why Poppy’s Place?

Poppys Place is an animal rescue that have two bases – one in Colchester and the other in Dartford.  They’re 100% non-destruct, and often take cats in that are hard to adopt.  The love and care they have for the animals they rescue shines through everything they do (just read Sybil’s story here).

What am I doing to help them?

I’ve made a set of six fused glass coasters each with a different cat image on it, and I’m going to give 10% of every sale to Poppys Place. You can find the coasters on the Sparkly Place Fused Glass Facebook coasters plain

They will make a lovely addition to any cat lovers home.  And don’t worry, I haven’t forgotten dog lovers – they will be another set for them, with the same 10% going to Poppys Place.




May News Round-Up

May News Round-Up

I had so many plans for May – which is Ehlers-Danlos Syndrome awareness month, and it’s just all gone by in a flash of bad health, hospital appointments and glass making.

Fused glass making is a new hobby I’ve got into, and I’m really enjoying it.  If you’re interested in seeing my new makes I have a facebook page and a Folksy shop (the UK equivalent of Etsy). I’m also running a competition to win a Dotty Suncatcher at Facebook as soon as my page reaches 100 likes.  It’s difficult starting a new page from scratch, so any support there would be really appreciated.

Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant

Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant

I’ve been making jewellery for awhile, and have wanted to try glass making as something that would go nicely with it (i.e. making pendants/jewellery out of glass), but also being able to branch into something different like dishes, candle holders, etc. I find the jewellery making market quite saturated, and difficult to stand out. Not that I would ever be well enough to make a business out of my crafts, they all remain hobbies, but it’s still nice to sell the odd thing to be able to pay for my glass or beads!

I’ve spent most of my month having medical appointments, including having some awful tests on my bladder – which I will never ever have again. They all came back clear for blockages/cysts, which means it’s down to spasms probably caused by the Ehlers-Danlos Syndrome, so the next step will be medication.

I’ve also been to Cambridge to visit the biggest sleep specialist clinic in the UK.  I’ve had problems with my sleep since I was 15 – from severe bouts of insomnia, sleep patterns all over the place, horrible levels of fatigue, day-time sleepiness, and unrefreshing sleep.  I got put in the wrong clinic – I should have seen the consultant as it’s the EDS causing the problems, and the autonomic dysfunction and adrenaline issues that go along-side the condition.  Instead I got put in the nurse-led insomnia clinic, where they give sleep hygiene advise, such as go to bed at the same time, have a dark room, etc.  I know.  I’ve had this problem for twelve years, I’ve tried all the basics.  This visit was an end-of-my-tether, absolutely desperate need for real medical help.  Luckily the nurse did seem to understand my point, so I’m going back next month for a sleep study test which will hopefully be a start, at least.

For the last year I’ve been trying so hard with exercises tailored towards my condition.  For sometime I’ve stumbled along seeing physiotherapists who know nothing about my condition, and having a six-week block of hydrotherapy every few years.  So sometime ago I decided to put my foot down, and get some real help.

I found a physiotherapist who specialises in EDS, a rarity indeed.  His clinic is in another town, but the way he does things means I don’t have to visit that often – he gives me lots to keep going on my own, and does progress checks.  I also started doing 1-2-1 Pilates sessions.  I’ve tried this a few times – joining a class, or going to the physiotherapy-led Pilates sessions at my local hospital.  Both were total disasters, and were aimed at people way healthier than me. Even the hospital ones which I thought were for people with injuries were awful – as most people in the sessions had one problem area – a bad knee, a bad shoulder.  Sadly that’s way above my level, as I can’t stand for more than a few seconds, and have problems with every joint and muscle group.  So I would just end up half-collapsed in the corner, rather than having effective assistance.

1-2-1 has been great – the instructor has tailored everything towards my condition and problem areas.  It’s all on the mat, so no standing at all – and she breaks everything up so I’m not concentrating on one area for too long, which always leads to a flare up.  What I do is very basic compared to a healthy person, but between the physiotherapy, pilates and more regular hydrotherapy, I’ve had lots of improvements physically – more muscle control and strength.  Sadly it’s not translated into any pain relief at all, which has been incredibly frustrating as that’s obviously why I’m doing it.  No one can tell me why it hasn’t helped in this way, but I’m not going to give up – although it really should have helped even a little by now, so I’m not sure it ever will.  Hopefully it will stop things getting worse, and help prevent additional injuries though, so it still has a place.

My last piece of news, good this time, is that I’ve now completely given up my huge vice – Diet Doctor Pepper for just under six months.  I’ve been trying to kick that habit for years, so I’m thrilled.  I’m now a water and ice kinda gal.

So that was May.  Hopefully June will bring more glass making, less medical appointments and lots of warm weather.

The Balancing Act of Living with Chronic Pain

The Balancing Act of Living with Chronic Pain

Have you ever had pain?

I don’t mean a headache, or even a broken leg.  I mean long-term, unrelenting chronic pain.  ‘Chronic’ typically means pain that lasts more than six months, and is generally past the point you’d have expected to heal. It doesn’t mean it’s psychosomatic. It could be an injury that keeps recurring, something that has healed incorrectly, or you have a condition that causes constant pain. Acute pain doesn’t mean the pain is worse, it simply means that the pain has lasted a short period of time. You can have pain at different levels of intensity – whether chronic or acute.

Before I had chronic pain myself, and for a long time after, I believed there were painkillers that could stop it. However, for the vast majority of people this isn’t the case. I won’t say there isn’t anyone who has found a painkiller that takes all their pain away, but for most people the best they can hope for is a reduction in pain levels. Something that turns down the dial, as it were.

Pain medication is a complicated area with no one-size-fits-all approach. There are lots of different types of painkillers, such as those that reduce inflammation, medications that work on nerves, antidepressants that also help with pain, and opioids which bind to specific receptors in the body  . Further within the types of medications are even more options. It can have an immediate or slow release effect. You can take it by pills, patches, topical application, liquid, under your tongue, injection, and so on.

Once someone has exhausted the over-the-counter options, it can be a difficult decision to go to the doctor to ask for something different. It shouldn’t be. Pain deserves to be managed as well as any other symptom of a condition, but there seems to be far more judgement intrinsically linked. Perhaps it’s due to the fact pain is invisible, or maybe because it’s hard to comprehend the impact of when pain becomes chronic. Those feelings of judgement can also be internalised – that you’re not the type of person to pop a pill. That other people manage without. That it’s not healthy.

I remember once having an assessment by a Physiotherapist. In my area, they have something called a Spinal Pathway, so anyone wanting to see a doctor to have treatment for back pain has to be assessed by a Physiotherapist first. My GP had referred me as she felt an appropriate course of action was to see a consultant to discuss having some joint injections into my spine. After talking to me for a couple of minutes, the physiotherapist declined my request. I asked why, and he responded, “You don’t seem to be screaming out in pain for them.”

I could only sit there in disbelief. Pain is subjective, and very often when you have chronic pain, the amount of pain you’re in doesn’t show on the outside. If someone healthy woke up with the level of pain I live with on a daily basis, they’d be straight into Accident & Emergency begging for help. The fact that I’m not crying or screaming, and may even be upbeat and smiling is not because I’m brave, or special, or have amazing pain tolerance – it’s just that I’ve been in pain for 13 years straight this July. You have to learn to live with it to some degree, as there’s no other choice. A certain amount of pain becomes normal. That’s not to say I don’t have bad days, or that I don’t ever cry, or that the level of pain regularly jumps above the threshold I can cope with. It does, but I usually don’t go out on those days if I can help it.

Seeking help for pain relief with medical professionals always carries some risk, that somehow you may receive the dreaded drug seeker label. It happens all the time, to completely innocent people who are just trying their best to manage their pain, and have no interest in abusing the medication. The problem is your GP sees you for around ten minutes at a time, and for me I often have telephone appointments as I don’t have the energy to get to the surgery – so she can’t even see me.  My GP is very nice, but she’s perfunctory and to the point. We look at medications and their dosages and side effects. She’s never asked me, How does your pain impact you? What help do you need? What does a normal day feel like for you? It’s likely because those ten minutes are ticking past, she’s already an hour late and has a room full of patients waiting. I understand the reasons why, but it’s hard for her to then build a true picture of my life. It would be very easy for her to see me sitting next to her, dressed and holding it together and wonder if it’s as bad as I say without that vital background of how long it took to dress, what help I needed and how long I will need to sleep when I’ve got home from the appointment to recover.

If someone has asthma, diabetes or a high blood pressure – there are tests to back-up what they’re saying. An asthmatic can blow into a Peak Flow Metre to show their inhalers aren’t strong enough, but chronic pain patients only have their words, their actions and the hope that the doctor will understand. It’s so easy to say the wrong thing that stops the doctor from understanding, and make them doubt you. But would a doctor judge an asthmatic who needs a stronger inhaler? Would their character or appearance even come into it?

My pain has been pretty uncontrollable lately. In some ways I’ve wiped out months of my life by changing to the wrong medication. So many plans went out the window at a moment’s notice. Frustratingly, I was undoing months of progress of physiotherapy.

Pain relief can be one step forward, and a marathon back.

Then I got myself into quite the quandary. I found a medication that worked really, really well. But only for a little while, and then the bad days were horrendous. My doctor was happy to keep increasing to keep those good days, but I always knew the bad days were coming. And they were so far above my normal threshold of pain, I couldn’t even begin to explain. But it was so hard to give those good days up – the days where I could function for longer than normal and even be productive.

I then had to make the decision to leave those days behind.  I had to. I could have kept increasing the strength, but when would it end? I’m in my 20s – I have years and years of pain relief ahead of me. If I max it out now, where the hell would I be in my 30s, 40s, 50s and beyond?

With every medication you take, you have to weigh up more than whether it helps, but also look at:

  • Are the side effects bearable? Are you taking six different medications just to counteract the side-effects?
  • Your tolerance levels. Are you constantly having to increase the dose because your body gets used to it?
  • Your levels of functioning. Some of the best forms of pain relief make you incredibly drowsy, or make you feel ‘out of it’. That might be fine to have a little break, but if you want to leave the house, you need to find somewhere in-between.
  • Can you access it? Not every medication is available in every country, some are through consultants or specialists only.
  • The relief you get. Taking all the above into account, is it worth it?

Living with chronic pain can feel like you have multiple spinning plates that you have to keep in the air. One falls, and the medication isn’t any good. Then, when you finally get a level of pain relief you can live with, someone throws a spanner in the works, such as this morning when my GP phoned me to say the new pain medication I have been put on has just been ‘red-listed’ meaning only secondary-care (consultants) can now prescribe it.

It’s frustrating and exhausting trying to keep all those plates up. It’s important to remember however, that this is not a sprint or a marathon, it’s a long-term balancing act.

Mini Pain Relief Accessory Haul

Mini Pain Relief Accessory Haul

Got some new goodies this week!

It’s sad when you get excited about a new pill holder, but there you are!  I really like the colours, and the amount of boxes there are to split things up.  Sometimes I find I don’t take things as often as I could, which then increases pain levels.  So having it set out like this will show me if I still have more to take in a day.  At the moment I’ve just got paracetamol in there, but got plenty to add.  You can take each day out, so you only need to carry one section around with you at a time.



Next are two items to help my neck.  The base of my neck burns hot pretty much all the time, probably from inflammation.  I picked up this cool pillow pad at a mobility shop, as sometimes it’s so hot I struggle to sleep.  I thought this might help, particularly in summer.


Similarly this is designed for the head, but is the right width to wrap around my neck when it’s burning to try and soothe it.


I’ve had a bit of a saga to try and get some orthotics sorted.  My first referral was rejected by my GP, with a note it had to come from a consultant.  It took me five months to see one, then another three months to get an appointment.  So, nine months in total and I’m sitting in the orthotics office, only to say I should have been sent to the hand clinic to see a specialist!  Argh!  Lucky it didn’t take as long this time, just two months, and I saw them last week.  Luckily they had much better ideas than the huge white plastic splint the orthotics departments had suggested – which immobilised my thumb completely.

What I needed was something that allowed my thumb to bend forward, but not backwards so I could still make jewellery.  And I also needed something to provide gentle support when it was painful and inflamed.  The Occupational Therapist gave me two things – a thumb splint, and some Cobon tape.



The splints are pretty subtle when they’re on, and don’t look so awful as some of them.  They allow the forward movement I need, but stops the joint from hyper-extending backwards.  When using my jewellery pliers it will still allow me to put the pressure on the wire I need.

thumb splint
So they’re my new gadgets!  What do you think?  Anything you think I need to buy?


11 Tips for Learning to Drive with a Disability

11 Tips for Learning to Drive with a Disability

I found learning to drive really difficult.  I had lessons over two years, and I don’t even want to begin to work out the cost of that.  Neither of my parents had a car, and so my lessons were my only chance to practise.

I found it hard to coordinate everything due to my then undiagnosed Ehlers-Danlos Syndrome, and had awful muscle pain from using them in a different way.  I could never have more than an hour lesson as my ankle and foot would go dead, and I found it all very exhausting.   In addition, I was also very nervous/anxious, and just thinking about my test caused me to shake like a leaf, which then made me make loads of stupid mistakes.

But my worst mistake was my choice of instructor.  I picked a lady who stated she specialised with nervous drivers – but this couldn’t be more wrong.  Her style of teaching was to keep quiet while I drove, but then ask me to pull over and ask “Where do you think you went wrong on the roundabout five minutes ago?”  When I didn’t know/couldn’t remember she’d get cross.  She spent all the lesson pointing out my mistakes, with the atmosphere getting more fraught.

As time went on, I found instead of growing in confidence I became totally convinced I would never pass.  It felt too awkward to ‘fire’ her, so I continued with this situation for far too long, ending numerous lessons in tears.

I then went to university, which gave me an opportunity to get a new instructor.  He was completely different – calm, more positive and quickly my confidence began to increase.   I decided that before I took my test I wanted some more intensive lessons – more than the one a week I was having, but my packed university schedule meant that was impossible.  So I spent my Easter break having lessons every day for two weeks, with a test at the end.

I failed.

However, it wasn’t the total disaster I thought it would be.  I got a major for hesitation because on the way back to the test centre a bus stopped in the middle of the road.  I couldn’t see around it, and being quite a busy road I thought I’d be likely to meet on-coming traffic if I went ahead.  We waited about thirty seconds, and then continued – but I apparently should have gone.  I think it was a little harsh, but there you go.

My second test was back in my university town.  I was a hundred times more terrified.  My legs were shaking so hard I kept stalling, and I made silly mistakes.  At one point I tried to start the car three times in a row, and it kept stalling.  I couldn’t understand why, until I realised I hadn’t put it into gear.

As we pulled up back at the test centre, my instructor who was waiting outside looked over to see how I’d done.  I shook my head.  I’d been a mess.  My test examiner asked what I’d just said to him, and I said I didn’t think I had any chance of passing.  She responded, “Well I disagree.”  She then handed me the pass certificate.

I can’t even begin to explain how I felt.  I know everyone feels joy at passing their test, but I had convinced myself so thoroughly I would never ever pass, and it had taken so long, and being able to drive was completely life changing.  I think it does take on an added meaning when you have mobility problems.

At that point my mobility was going downhill rapidly, and I was struggling to get around the university, and also the long trip home on the train (through London on the tube).  But overnight my world opened up – I could get to the shops, see friends, and go home whenever I wanted.

That was almost six years ago.  I was lucky I took my test before my condition got like it is now – I’d really stuggle with the lessons, but there is lots of help available to help people with disabilities.

Here are some tips I learned in the process to help you pass when you have a disability:

  1. You need to be comfortable with your driving instructor.  Even if they’re nice, or you’re scared of hurting their feelings – it’s your money, your time and it needs to be right.
  2. Make sure they fit your learning style.  I tend to do a lot better when someone tells me what I did right, instead of making me feel bad by making a big deal out of everything that went wrong. Either explain that to them and hope they’ll adjust to your learning style, or move on if they don’t.
  3. Explain your health issues to them.  They can make adjustments – such as trying to make the seat more comfortable, mixing in practical parts of the lesson so you get a break, or pointing the direction they want you go as well as saying right/left if you have any processing issues.
  4. Your instructor can request you assessor points the direction they wish you to go in your test as well as saying left/right if you have dyslexia or processing issues.
  5. If you can provide supporting evidence, you can request additional time while taking your Theory Test or Practical.  Make sure to explain any physical issues to your examiner so they’re aware if you struggle to turn, or whatever the issue is.  You can also ask for a disability specialist assessor, who should have had additional training in this area.
  6. Make sure you detail all your needs when booking either your practical or your theory.  The last thing you want when you’ve just arrived at the centre when you’re so nervous you can’t think straight is to start having to point out things that aren’t accessible to you.  And if you’ve already told them, you’ve covered yourself and it isn’t your problem – it’s theirs.
  7. If you can’t make it to the test centre for your Theory Test (for example it’s not accessible to you) it’s sometimes possible to take your theory test at your home.
  8. There are specialist instructors/cars out there if you need an adapted car, or someone used to working with people with disabilities.  Ask for recommendations, or ask bigger driving schools if they have an adapted car on their fleet.
  9. If you receive High Rate Mobility Disability Living Allowance or the Mobility Component of Personal Independence Payment you can apply for your provisional driving licence at the age of 16, instead of the normal 17, which is really helpful.
  10. Motability and other charities sometimes offer assistance towards learning to drive when you have a disability.  If you’re working then it’s also worth approaching Access to Work if driving would enable you to remain in work, or make life easier for assistance with lessons.
  11. If you need help to find the right adapted car for you, places like the Forum of Mobility Centres or the Queen Elizabeth’s Foundation for Disabled People can help.

Remember it may take you longer than someone else, but you will get there in the end.

Also check out this great post by Disabled In Scotland who details adaptations that can be made in the car, and the different route he took to find the right instructor for him.  There are also some great tips here for deaf drivers.

Do you have any tips to share that helped you?  Did you find it a struggle to pass your test, or was it a breeze?

Happy New Year?

Happy New Year?

A New Year generally brings about mixed feelings.  Traditionally it’s a time to reflect over the year that’s passed, the good and the bad – and also to think about your aspirations for the year ahead.  It’s also a chance to draw a line under the negative, and to have a fresh start.

Over the last few years those goals for the year ahead have shifted quite dramatically for me.  They used to be around completing my studies, and then became quite work focused – whether it was finding a job I loved, or making progress within my work.  Taking the project I was working on forward, or becoming a manager.  They may have also been more fun – like sharing memories with friends, going on holiday with family, or visiting new places.

Over the Christmas period I managed to meet up with friends I hadn’t seen in awhile, and family members who told me their news, and it’s been playing on my mind ever since.  They’re just getting on with their lives – getting engaged, celebrating promotions at work, looking forward to their holidays abroad, planning on meeting up for weekly squash.  The kind of normality that’s just faded away for me. Thinking about the things that stick out for me from 2013 – they’re sadly mostly health focused, like being given the go-ahead for some new treatments, the nice consultants I saw, and the nasty ones.  And then the biggest – having to stop working.

When I look forward into 2014 I see a couple of dates – the lumbar injections in January, the infusions in March.  Then a whole lot of nothingness.  I don’t know what will happen in 2014.  Obviously no one does, unless they have a handy crystal ball – but every year since I was 15, my physical health has been quite rapidly declining.  Each year I can cross a few more things off the list I can no longer do.  This time last year I was just about holding a job down, this year I’ve spent more of my week in bed, than functioning.

Even New Year’s Eve itself was quite different this year.  Having had a bad night previously, I spent most of the day asleep.  I woke at 6pm, and it took awhile for me to even realise it was New Year’s Eve!

That said – if I continued to dwell on what’s changed or will continue to, or if I thought “well there isn’t any point anymore!” then nothing will improve.  Instead it’s about shifting priorities – finding interests and hobbies that are manageable, and allow me to have things to look forward to without feeling like life has hit stalemate.  Or even better, saying to myself, “I’ve survived another year.  It wasn’t easy, it was painful – but I’ve done it, and can continue to do it.”

But if you are someone who is able to go to weekly ‘insert activity of choice’, head out for a drink with friends at the last minute, or can go on holiday and spend all your time planning what you’ll do when you get there – then treasure it.  Please.  Health is precious – and can vanish in an instant.


“There’s no crying in baseball!”

“There’s no crying in baseball!”

Frustration.  Credit to Staci Becker

Frustration. Credit to Staci Becker

I don’t tend to cry.  I mean – give me a sad film, or book and I’m sobbing like nobody’s business.  But in pain, randomly when it’s all just got too much?  Not that often.  (Although let’s take my last year of work out of the equation, because dear god I was a mess.)

But I have cried in my last three appointments, and all three times it was around the same topics.  Frustration at the “system” and exercise.

The last few months have been tough for me.  My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house.  It’s always tough when you have a flare up, because of the fear this is your new reality.  This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years.  At the same time there has to be hope.  Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…

And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.

So then I pin that hope on others.  That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…

And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it.  I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.

And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong.  She does read the research I push at her, and she turns and says – “Yes, we do this here.”  There’s a pause, my heart races. “But not for people with your condition.”  And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad.  And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.

And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?”  And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.

It’s so frustrating, I hate crying – and on their own are such minor things.  It’s the build up of it all, the feeling they’re just not listening.

But I need to wipe my tears, because it gets me nowhere, and push on with what I can.  I’ll get there.

Fluffy TV shows to watch on sofa days

Fluffy TV shows to watch on sofa days

If you have a chronic illness, then you often have a lot of days in bed, or stranded on the sofa.  I’ve been having a lot of those lately, and so I’ve been looking for new TV shows to watch.  I’m not looking for shows that need any brainpower – just ones I can marathon and enjoy even if I fall asleep halfway through!

Here’s a rundown of some easy-watch TV I’ve been enjoying lately.  For some reason, I think all these shows are on TLC.  It’s channel 125 on Sky, and 167 on Virgin in the UK if you want to check them out.

Sister Wives

I’ve been watching this one for quite some time, and am excited it’s just starting in the UK.  It follows a Mormon family that consists of a husband called Kody Brown, his three wives Meri, Janelle and Christine, and their 13 children.  The show begins with Kody dating Robyn, and her then joining the Brown family as his fourth wife.  The show is a fascinating look at polygamy and all the benefits and downsides.  Every wife is completely different, and the show doesn’t shy away from showing the jealously between the wives and the long transition both the wives and the children go through to accept Robyn and her three children.  I also enjoy the interviews with the older children – who have mixed views on polygamy themselves.   This one is my favourite.

Watch this for: Family dynamics, a peek into a different world, lots of interesting background information slowly revealed and lots of highs and lows.

 Dance Moms

I have a love-hate relationship with this show.  It follows an ‘elite’ dancing team that go to competitions every week, although much of the focus is on their mothers and the drama both between each other, and them and the leader of the dance studio – Abby Lee Miller.  Abby treats the children like crap – preferring to bully them, scream at them and insult them, than to just teach them.  I find this very difficult to watch, and get frustrated with the mum’s who often declare “I’m done,” storm out, before they return the next day.  I don’t know how much of the drama is for the cameras, because I cannot understand why any parent would allow their children to be treated that way.  There are some pretty epic showdowns between the mums – even some physical fights thrown in.

A major running theme  of the show is Abby’s blatant favouritism of Maddie, one of the girls in the group.  While she is a great dancer, the other parents wonder if their child would be as good if Abby spent that same amount of time and energy with them, and were treated as nicely.

I particularly root for Chloe and Nia, and I worry for Brooke – who is an acrobatic contortionist, and with her extreme flexibility and long-running chronic pain – I worry is hypermobile and could be heading for a world of trouble.

Watch this for: Extreme drama, talent, parental relationships and fantastic dance routines.

Cheer Perfection

This show is still quite new, but follows a group of young cheerleaders in the US, and more importantly the drama between the mothers.  The show differs from Dance Moms in that the coach Alisha actually treats the children well, and just wants some peace from the drama!

Watch this for: Drama, spoilt diva mothers, lots of sentences including y’all and backstabbing.

Breaking Amish

I caught this one as the first season is available On Demand through Virgin.   It revolves around a group of young adults – four Amish, and one Mennonite, leaving their communities to move to New York.  I had no idea what I was expecting, but within a few episodes there were arguments, relationships,  modelling, tattoos and a whole lot more.  There are rumblings this show isn’t entirely true, but it’s still pretty entertaining.

Watch this for: A look into another culture, tension between the group members and lots of past revelations.

LA Ink

I have only watched half a season of this so far, but I’m about to marathon it from the beginning because it’s got my attention.  It follows a tattoo shop in LA (no surprise there!) ran by Kat Von D.  So far it from what I’ve watched the shop is a tight-knit group, with the newest employees being outcast for varying reasons.

Watch this for: Tattoos ranging from pretty to horrible, the odd celebrity visit and lots of shop-based drama.

What fluffy shows do you like to watch when you’re not at your best?  I foresee a lot sofa days coming up – so the more recommendations the better!

Credit to Alvimann

Credit to Alvimann

Battling to Sleep with Ehlers-Danlos Syndrome

Battling to Sleep with Ehlers-Danlos Syndrome

In my next life I shall be a cat who sleeps anywhere.

In my next life I shall be a cat who sleeps anywhere.

I was settling down to go to sleep the other night, and putting my joints in the right positions – and it made me think about how much effort I have to go to at night to get it right.  Most people jump into bed, lay in whatever their favourite comfortable position is and go to sleep.  But for me, a lot of thought has to go into it, and it still often goes horribly wrong!

First of all it’s all about placement.  I have to make sure no joints have too much pressure on them – particularly my hips, knees and shoulders.   Sometimes it’s a no-win situation, for example I have to sleep on my side, and if I lay with my shoulder underneath me then the pain builds.  However, if I pull my shoulder forward to take the pressure off – it’s likely to subluxate or go into spasm.

Many of my joints have to be bent – particularly my elbows and knees, otherwise they will lock in hyperextension (this is when the joint goes past its normal range of movement) and ‘freezes’ in place.  When this happens I have to warm the joint up, and then slowly, and very painfully force it out of hyperextension and fold it back into position.  It will usually throb with pain sometime after this.

However, other joints must not be bent, including wrists, and fingers, otherwise oddly they too will freeze in this position.  Last night I ended up in a lot of pain because in my sleep the top joint of one of my fingers had bent.  The pain in just that one tiny joint woke me up and kept me awake for some time!

Most importantly – with any joint, they cannot get left in the same position for too long, or I’ll be in for a world of pain in the morning.  So I have to wake up regularly to turn over, and move each joint in turn.  Often a joint gets locked up – usually one of my hips – and I have to turn over and try and drag it over with me which is more difficult than it sounds.

In addition, as anyone that knows me will have seen and heard – I’m always having to crack my neck.  This continues throughout the night – with the pressure in the joint building up until it wakes me, and I have to crack it all out which you can’t do very well lying down.

Sometimes trying to solve one issue causes another.  For example putting a cushion between my knees help eases my lower back pain slightly.  However, on day three of using this cushion I get absolutely horrendous hip pain that leaves me unable to walk.

No matter how carefully I try and keep in the right positions, my fidgeting continues into my sleep and that causes a lot of problems.  I cannot sleep on my back, at all – but sometimes this happens, and in return I wake up screaming with burning nerve pain shooting down my leg.  I also frequently get cramps, or muscle spasms that make me jump awake.

This is just a normal night – often I have an injury, or a flare up in a specific joint that throws everything out.

So you wonder why I’m tired?  People with Ehlers-Danlos Syndrome struggle to get into the final REM restorative stages of sleep.  We also tend to wake up naturally hundreds of times a night.  On top of that, I suffer from insomnia – and often don’t get to sleep at all until 6:00am – 7:00am.

So no, I don’t do mornings.

Fellow EDSers – do you relate?

Parking at hospital raises blood pressure!

Parking at hospital raises blood pressure!

Blue Badge parking is a fantastic invention, and makes life so much easier for people, but there are often places where there simply aren’t enough spaces for everyone.

In my town – it’s at the local hospital.  Parking has been an issue there for years, with the hospital regularly moving external departments to the same main site – but never increasing the parking.  The worst place for this is at the wing that contains physiotherapy, the various gyms, hydrotherapy, prosthetics, etc.  I always arrive early to my appointments – and it’s luck of the draw that you either catch someone leaving, or have a long wait.  The way the car park is laid out there isn’t an easy way to queue up, so people dot about and just have to keep an eye on who is next in line.

So today I had hydrotherapy and arrived about 20 minutes early.  I waited, and waited.  After about 15 minutes, a lady crossed the car park heading to her car.  I pulled out, signalling to make it clear I was waiting – when a new car arrived, and rushed in, passing me.  I couldn’t have pulled out further as it would have blocked the lady from leaving.   I head towards the space, as he starts to back in.  I beep, and wave to get his attention.  He ignores me, and parks.

When he gets out – I ask him why he did that.  He shrugs, and said he didn’t see me.  If someone doesn’t see a car in the middle of a carpark, signalling and beeping – they shouldn’t be driving.

So I wait, and wait – my appointment time passes.  There’s nothing I can do, no where else to park.  Eventually another lady moves her car, and once again a massive four-by-four suddenly drives in and takes the spot.  I’m furious.

Again, I ask her why?  I’d been waiting half an hour, missed my appointment time – and there is a queue.  She says her daughter has an appointment.  Right, well no one goes to the hospital for fun?  I explain I do too, and I’ve been waiting like everyone else.  She then looks at me and says “It’s your problem.”

I can’t repeat what I said next.

When did common decency vanish?  Everyone knows parking is difficult at this hospital, and most of the time everyone does their best to keep the system fair.  It sounds like such a minor thing, but in the end I had to park on a verge, then struggle desperately to get my wheelchair out and down the kerb.  My stress levels were high by the time I got to my appointment, fifteen minutes late – which then increases my pain.  It just makes me not want to go the hospital anymore, as the parking situation is so ridiculous!

Credit to ralaenin

Credit to ralaenin


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Experiences with Exercise

Experiences with Exercise

It’s something that often fills those of us with chronic illnesses with dread. When getting out of bed is difficult, the concept of exercise can seem unobtainable.

I have tried various things over the years, but always found it difficult to do anything reliably and work at the same time.

It’s something doctors put a lot of emphasis on. One consultant even said I should be aiming at six periods of exercise a day, and in return I wanted to laugh in his face.

There is no denying the benefits of exercise. It keeps your joints mobile, it stops muscles atrophying when you have limited mobility, it can help control weight and it can do wonders for your mental health and sense of achievement.

But there are some significant difficulties surrounding exercise as well.

I recently had to stop working.  Whether its permanent or temporary, I don’t know but I did want to create a positive out of the situation and use any small gains in fatigue levels to take part in some form of exercise.  At least – my form of exercise.  I’m never going to be able to lift weights, or jump on a running machine, but I do want to keep my joints as mobile as possible, using gentle methods.

First, I had to be realistic. Any attempts to join any class in the outside world, even at beginners level, has met with disaster. So the most obvious solution was to seek classes aimed at people with disabilities.

The first class I tried was one run at the local university by a sports science professor. He has a room where twice a week he sets up various activities using a circuit approach, and the class proclaimed itself to be for people with disabilities.  This made me feel more comfortable – I didn’t want to be the ‘special’ person in the room, I wanted to be like everyone else.

I was disappointed when I arrived in my electric wheelchair to find everyone in the class jogging in a circle to warm up. No one had a stick, a wheelchair – any visible sign of a disability. That’s not to say they don’t have a disability, of course many are invisible – but I was taken aback by the fact they were jogging happily for ten minutes without an issue. They were all middle aged, and no one spoke to me while I sat waiting for them to finish warming up, and then partner up, until one lady walked up and said, “And what’s wrong with you then?”

I usually have no issue explaining my condition to curious people – but I suppose a class proclaiming itself to be aimed at people with disabilities wasn’t a place I was expecting it. I was then partnered up by the second person helping to run the class, rather than a normal participant.

The circuits included activities like an exercise bike, weights, a trampoline, a balance board, tennis against a wall, table tennis, stretch bands, an arm pedalling machine, throwing a ball to one another.   All way above my limits, and unfortunately the vast majority involved standing up which excluded me right away.  Instead I was taken round to a handful of exercises aimed at the arm, the only ones I wasn’t excluded from outright.

But of course the problem I have is that repetitive movement in one area causes a lot of trouble, so very quickly my arms went into spasm and I couldn’t do anymore.

The rest of the participants were gleefully competing against other teams in table tennis, and how many of each activity they could do without any issue.

Table tennis Credit: Mishahu

Table tennis Credit: Mishahu

I quickly felt the odd one out, and like I was causing issues because I was taking up one of the instructors time just to work with me. I also wondered how I could keep coming – would someone feel like they’d have to partner with me, and then miss out on the vast majority of activities and their competitive fun?  I wasn’t able to take part in 95% of the activities, and those I was trying were agonising.

Yet having sat out the warm up, warm down and many of the activities – I still found myself massively impacted the next few days in terms of pain and fatigue, and had to remain in bed.

I didn’t want to give up at the first hurdle, however, so I spoke to a physiotherapist at the hospital who said they were running Pilates in small groups. This seemed perfect – I have always wanted to do Pilates, but general classes just doesn’t allow for my problems. But a physio – who has my medical file, and hopefully a group of people with similar conditions to me would be perfect!

I went on the waiting list for a month and looked forward to my first class.

However, my first session was a case of déjà vu. Everyone seemed to have an ‘injury’ rather than a condition. This is a very different kettle of fish. An injury is likely to cause pain by a specific movements in one area.  They all seemed fit and healthy, and just had to avoid certain exercises. I was quickly the odd one out, who couldn’t stand.  I tried desperately to keep up, but within a couple of movements I was in agony, shaking and couldn’t keep up.

The physiotherapists assistant stopped walking round, and was assigned to work with me. Even once again sitting out of most of the class, by the time I left I was a mess, and had to spend four days in bed recovering.

I ummed and ahhed over returning, but felt I should – I’d waited so long to work with the physios. I would just have to sit out of even more. Even if I did thirty seconds of the class – that’s still thirty seconds more than nothing!

However, even by further reducing the amount I did and leaving early – I spent four days in bed. The physio then suggested the class was not for me.

I want to exercise, so desperately, but the impact is just too great.  I have tried chair-based programmes, or DVDs, but when you’re struggling to get out of bed in the morning, or to shower or get through the day – it just seems unobtainable.

Have you found an exercise that works for you?  Please let me know in the comments.

Bring on the Bubbles!

Bring on the Bubbles!

Eighteen months ago I moved into a bungalow. After years of struggling with the steep stairs, and also having a hard time parking my car anywhere near where I lived – it was amazing. I love the bungalow, the ease of parking outside my front door, the shower, the pretty garden and the privacy.

But I do miss something.

Really, really miss it.

A bath.

Despite baths being hard to get in and out of, but the pain relief was worth the effort.  I loved nothing more than sinking into a bath filled to the brim with hot water, bubbles and a Lush bath bomb. And a book, that always got slightly soggy.

And to ease the pain I’d load it up with Epsom Salts too.

To celebrate my mum’s birthday, I booked her a surprise night away I can’t travel far anymore, so it wasn’t very far away. My treat? A bath!

Ugh, it was as good as I remembered – a brilliant way to de-stress and relax my muscles.