For EDS Awareness month from Sunshine & Spoons “What It’s Like To Be A Kid With Ehlers Danlos Syndrome” – including mine!

Another great post for Ehlers Danlos Awareness month, this time from Hannah at Sunshine and Spoons blog.  As a child growing up with aches and pains, dislocations, sprains, dizzy spells, clumsiness, migraines, circulation problems….it really was just how life was as no one even thought to join the dots, let alone consider a syndrome that might be responsible.  I never even heard the name “Ehlers Danlos” until my late 30s – although Marfans was mentioned to me aged 20.

I do know about EDS now and have made it my business to as so many with rare illnesses need to.  The result has been that I recognise my kids are growing up symptomatic – although getting a diagnosis is proving difficult as referrals are pushed from the desk of one consultant to another – and understanding that not everyone has pain daily, struggles to keep up with hand writing in class, is constantly twisting an ankle or popping a joint.  One son is living with severe migraines for which we seem to be in a constant loop of changing medication to bring some control as he is about to sit his A level exams.  His long neck gives him daily pain and undoubtedly contributes to his migraines.  My daughter, aged 14, has dislocations, daily joint pain, dizzy spells, writing problems…..the eldest, the student engineer aged 21, is hypermobile, has a sternal “deformity”, clumsiness, dizzy spells – sound familiar?? All three, whilst very bright, suffer massive anxiety to such an extent that over recent years we have visited CAMHS, Heads Together, use of anti depressants and mindfulness techniques.  I feel a whole post coming on…..being the age they are, mum has not been able to pin them down for a quote as I write this!!

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My younger 2 zebras and me!

So without further ado let me introduce some great children who have spoken to Hannah:

This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.

If you’ve been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.

Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.

But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. “

What it's like to be a kids with Ehlers Danlos Syndrome

 

For the remainder of the post and the children’s quotes please click on the following link

What It’s Like To be a Kid with Ehlers Danlos Syndrome

Living with Ehlers Danlos Syndrome – film for #EDSAwarenessMonth

I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month.  Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!

“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican

Managing dislocations – “I’m just Popping out for a While” – article by Jason Parry, Specialist physiotherapist

This article appears on the Ehlers Danlos Support UK Facebook page during EDS Awareness month.  It offers great tips for managing the dislocations that are a part of every day life for us zebras.

‘I’M JUST POPPING OUT FOR A WHILE!’

Article by Jason Parry, Highly Specialist Physiotherapist

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One of the most common questions I get asked is how to manage dislocations and subluxations, which is quite strange if I happen to be popping to the shops for some milk at the time. However, in all seriousness, this really is one of the most frequent questions I face in clinic when treating many of my hypermobile patients and let’s face it, it really is no laughing matter.

So where do I begin? Well, a good place is to firstly understand the difference between a dislocation and a subluxation.

A dislocation is defined as “displacement of a bone from its natural position in the joint”. This is where the two bones that form a joint fully separate from each other. If we consider a shoulder, for example, which is a ball and socket joint, a dislocation occurs when the ball (which forms the top of the arm bone) slips entirely out of the socket it should sit in within the shoulder. This can happen in any direction, but the main point is that the two bones completely separate. Ouch!

A subluxation is basically defined as “a partial dislocation”. It can be no less painful than a full dislocation, but the two bones that form the joint are still partially in contact with each other. So once again, if we consider the shoulder joint as an example, the ball which completely came out of the socket in the dislocation example above would still be partially sitting in the socket in a subluxation.

These events can happen in almost any joint, but some are more commonly involved than others, with shoulders, knees, thumbs and ankles seemingly some of the most prevalent.

Both dislocations and subluxations can be painful, irritating, infuriating and occasionally debilitating problems. However, they don’t need to ruin your life and can, with patience, effort, trust and time, be managed. Not necessarily completely eliminated, but managed.

Let’s first look at the reasons why dislocation or subluxation happens with a quick anatomy lesson. The main reason is abnormal collagen composition. Collagen – primarily Type 1 collagen – is the main structural protein of the various connective tissues in the body. It is found in ligaments, tendons and joint capsules, and makes ligaments and tendons strong like little ‘guy ropes’. What do ligaments and tendons and joint capsules do? Ligaments connect bone to bone, tendons connect muscles to bone, and joint capsules are like envelopes of tissue that surround a moveable (synovial) joint. So we can see that these ligaments, tendons and joint capsules play an important role in giving a moveable joint its stability.

Let us now consider hEDS (hypermobile type EDS). This is a Heritable Disorder of Connective Tissue (HDCT) caused by a defect in the structure, production or processing of collagen, which makes the collagen in ligaments and tendons stretchier (more lax). This means that joints are potentially less stable – hence greater propensity for subluxations and dislocations.

There are other reasons for dislocations and subluxations:

• Altered muscle tone: This can often account for dislocations. Inappropriate muscle patterning, in which certain muscles around a joint ‘switch on’ when they shouldn’t and then inappropriately work way too hard, can often ‘pull’ a joint out of place. The joint then also becomes easier to slip out, of course, if it is more lax in the first place. Muscle fatigue, spasms and stress can all play a part in this too.

• Impaired proprioception: Proprioception is the body’s ability to sense position and movement within joints and enables us to know where our limbs are ‘in space’ without us looking. It relates to coordination. Impaired joint position sense can cause joints to slip out of place.

• Repeated overstretching: Otherwise known as too many ‘party tricks’. I know many of you guys have the capacity to ‘amaze’ people with your ability to wrap yourselves into weird and wonderful positions that the rest of us gawp at. You know, those tricks you did as kids, popping your shoulders in and out of joint, or folding your legs over your head? Well, stop – it’s no good for you! Repeated overstretching to that degree will only exacerbate the laxity and the chances of the joints slipping out of place. I’m certainly not saying that you should never do stretches, but I am saying give up the party tricks and don’t stretch your joints way beyond ‘normal’ range. Just because the joint ‘goes there’ doesn’t mean you should take it there. So please forget about that career as a contortionist with Cirque du Soleil.

• The shape of your joint surfaces: Some of you may be born with shallow-shaped joint sockets or other bony shaped ‘anomalies’ that predispose a joint to possibly slipping out of position more easily. Unfortunately, that just may happen to be the shape of your skeleton.

• Traumatic incident: One of the most common reasons for a joint to come out of place for those of us without EDS. Traumatic incidents can happen to anyone, but your extra joint laxity may actually work a little in your favour with this one; it may prevent you damaging some of your ligaments/tissues in the way that a non-hypermobile person who suffered a traumatic dislocation probably would.

How often can these subluxations/dislocations happen, I hear you ask? The answer to that is different for different people. Some people get them maybe just once or twice a year, others once a month. Some people get them once a week and others once a day. Some people get them repeatedly throughout the day and in some people they never seem to stop. Either way, we need to try to reduce the frequency if we can, and manage them when they do happen.

In some people, the joint just finds its own way back in to place, and phew, what a relief. But in others, once the joint slips out, it won’t go back in again. The pain kicks in (often big time) and the most common and perfectly understandable reaction is… PANIC! At this point, some people pick up the phone and call for an ambulance – well actually they don’t; they’re often writhing in agony or they can’t actually pick up the phone especially if its their shoulder or wrist out of place, but someone else does – and off to A&E they go.

BUT WHOA THERE! STOP FOR A SECOND, DON’T PANIC, BREATHE NORMALLY AND STAY CALM!!

Panic causes more stress and more muscle spasms. Stress and muscle spasms cause more pain, and then there is less chance of resolving the dislocation. Easy for me to say, I know, sitting here with my joints all lovely and located without the associated agony. But trust me, if you want to start managing this situation and taking control, then this is what you’re going to have to begin to practise. Because what happens at A&E? Well, if they aren’t already fed up with you turning up 100 times a month and starting to get all ratty towards you – not fair I know – they will often give you pain relief of some sort (perhaps Entonox) or they may go the whole hog and give you a general anaesthetic. Then they’ll yank your joint back into place. All good, right? Not so, because often, maybe within minutes, the joint will pull itself back out of place again because of the muscles still spasming around the joint, and you’re back to where you started.

So what else do our A&E docs then sometimes do? They stick you in a plaster cast to ‘hold’ the joint in place. Imagine, then, the battle going on underneath it – your joint trying to pull itself back out of position again while being forcibly held in place by the cast. Sounds painful to me, and often is – and when then do you take the cast off? This doesn’t sound like a viable management solution to me or a good way of life for you.

So what should you do if your joint comes out? Here are the 6 key principles that I suggest you need to start incorporating in order to begin to get a grip of managing this situation as opposed to this situation managing you. The main aims are to stay calm, keep on top of the pain and allow the muscles to relax. It takes lots of practise and patience, but it can be done.

1. Breathe : Use slow deep, relaxed breaths. Try using some relaxation techniques, there are lots of different ones out there. As painful as it is, and as difficult as it may sound, you need to start to try to take control of this situation. So start to learn how to breathe through it.

2. Use Painkillers: Oh yes! I’m not a monster you know; I know how painful this situation can be. I’m not for a minute suggesting that you should just sit there and ‘suck it up!’ For goodness sake, take some appropriate painkillers (analgesia) if you have some. However, note the word ‘appropriate’. You should only ever take analgesia according to the dosage indicated by your prescriber. Never take more than the suggested dose. You might feel like it may not be enough at the time, but if it can take some of the edge off, then that’s a great start. Please don’t ever overdose.

What about Entonox (commonly known as gas and air) as pain relief? I am aware that some people have access to Entonox at home, or use it at A&E. There can be a role for it, but this must be used with caution. Prolonged use can lead to vitamin B12 deficiency and can interfere with DNA synthesis, not to mention cultivating a dependency, which are all big issues.

3. Support the joint: You need to try to make yourself as comfortable as possible (I know it’s not easy). Use pillows or a sling of you have one. Find a comfortable resting position as much as possible. This allows the muscles to relax and stop spasming.

4. Try heat: Hot water bottles, wheat bags and a warm bath can all help to relax spasming, overactive muscles.

5. Distraction: Try to take your focus away from the pain and the situation. Listen to music, watch a film if you can, talk to friends/family, try a relaxation CD/MP3. This can be helpful as a short-term pain relieving strategy. Again, it can help muscles relax.

6. Gentle massage: Sometimes gentle massage around the joint can help relax the muscles enough to be able to gently re-locate the joint or for the joint to just slip back into place by itself.

What if it doesn’t go back, I hear you scream (and I do hear you scream)?!

Don’t expect the joint to go straight back in. It is often not unusual for joints to remain out of place for hours or even days. But once it’s out, it’s out. It’s not going out even more, so try not to panic.

Isn’t it dangerous though? What about damage? Am I damaging my joint if it comes out?

It is highly unlikely. Your joint laxity allows for your ligaments and capsules to stretch. It is mostly just distressing as opposed to damaging.

When should you go to hospital or get help?

• if the limb starts to change colour due to a lack of blood supply
• if your limb goes completely numb
• if you have tried strategies 1-6 above, have waited a reasonable amount of time, and are still desperately struggling.

But as mentioned earlier, it is not unusual for A&E to relocate your joint only for it to pop straight out again or when the anaesthetic wears off. Therefore you need to learn to stay calm and to start to self-manage.

Learn Lessons!

One of the most valuable things you can do after a subluxation/dislocation is to reflect on the event once you have had a chance to calm down. Were you moving in a way that normally causes the joint to dislocate? Did you move without thinking? What was your posture like? Were you tired or overdoing it? Were you stressed about something? It is so valuable to look for triggers as to why the event may have happened. It may have been none of these reasons, but if it was, then you can hopefully learn to avoid repeating them in the future.

Finally, prevention is better than cure! It is obviously better if we can prevent these situations occurring in the first place as opposed to having to deal with them. To that end, the following can hopefully help to reduce the frequency of such occurrences:

• physiotherapy to learn to control the muscles around joints and to use the right ones
• rehab to improve proprioception
• the possible use of supports/braces if required
• trying to manage stress and anxieties.

But ultimately, stay calm! The more you stay calm when these events happen and manage it yourself, the easier it should get each time.”

#EDSawarenessmonth

Today, You beat Me

Today, You beat me,

I woke with You again

Wrapped about my back like a lover,

Pulling at my limbs

My shoulders splayed

My joints pulled with gravity.

 

Today, You never let up.

I tried to lose You

But You brashly force out the monster,

The worst version of myself

Cross and bitter,

My loved ones suffer.SONY DSC

 

Today, You rob me.

My time is destroyed,

I cannot sit and idle in peace

For my body betrays me,

As you are with me

Within, trapping me.

 

Today, You beat me.

My body is weakened

And tears have fallen as spirit breaks.

So, so tired, no way back

I am bereft.

Pain, You have won.

 

Claire Saul

Review “PainXit Tens machine” from Zec at Sat on my Butt blog

It is always interesting to those of us with chronic pain when a new pain killing device comes onto the market.  With so much metalwork and a spinal cord stimulator, I would probably be limited as to where this device might be useful, but Zec’s positive review on Sat on my Butt sounds like it could be worth a go!

“I have been sent a PainXit – TENS machine from designed2enable, simply put it is a portable TENS device to help combat pain.

I have a full size TENS machine and I have used it for many years, it doesn’t help with all of my pain but I know when it is likely to help and when it isn’t. I also have a similar pen device that contains a piezo crystal and delivers a shock when you click the button but I have never found it to be much help.

The PainXit – TENS machine is powered by a AAA battery and delivers a 1000 w at 0.4 mJ , now I know that sounds scary but believe me it isn’t.”

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Full review can be found Sat on my Butt

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designed2enable website

Pain Relief Cushions – my review of a natural product to aid in pain relief

Disclosure: “I have been given a “Cosy Cushion” Pain Relief Cushion as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

When we have pain the natural thing to do is reach for something to give us some comfort and hopefully in the process reduce the pain….or get rid of it!  This goes for a toddler falling and bumping a knee, to a broken bone, to labour and childbirth, to post operative pain.  Fortunately these pains are usually short lived (yes, I know that some labours go on for days, ladies) and will become a memory.  Not so chronic pain, which by definition is pain that has been regular and ongoing for over 6 months.

For most of us living with chronic pain, we have had to find our own methods to help to ease the symptoms in conjunction with drugs and medical intervention.  My back and leg pain is caused by nerve root damage, and I have always found heat to be one of the few things to offer me any relief.  So I was really pleased when Pain Relief Cushions gave me the opportunity to trial and review one of their wheat and lavender cushions.file_000-22.jpeg

Pain Relief Cushions state that their mission is to “provide freshly filled cushions at point of order” and that “the same cushion can be used hot or cold”.   The cushions can be heated in the microwave or will take heat from a radiator in order to “give a gentle, penetrating heat which goes deep into the muscles, eases and relieves pain”.  They can also be kept in the fridge and used for cold applications such as swellings and sprains.  The company is approved as a member of The Guild of Master Craftsmen.93fd76617fb1e63bbe687ab604fbddeb

I requested a long cushion to use across my lower back and down the length of my leg, but the cushions come in several different shapes and sizes to suit differing needs.  It arrived well packaged with a covering letter, a flier describing the product range and care instructions, and a separate insert with care instructions for the heating and freezing of the pillow.  The pillow is completely natural – the cover is luxurious cotton velvet, available in a selection of colours, and the filling is wheat and optional lavender.

I did opt for lavender and this was the first thing that I noticed on removing it from the packaging – a very pleasant change from some of the less sweet smelling similar products I have used before.  However, the teens in the house did not like the lavender smell, which initially becomes stronger upon heating – personal preference, I guess, as my husband and I both liked it.  The bag is well labelled with clear heating instructions and power settings for your microwave – an average time being 2 minutes.  The care instructions are easy to follow explaining the importance of bunching up the bag, that the microwave plate must be freely spinning and that a new bag might feel “damp” the first couple of times that it is heated.  Likewise the instructions for cooling/freezing are clear.

I have been using the Pain Relief Cushion daily for approx a month now and have been very happy.  When sitting I regularly use an electric heat pad but as this is plugged into the mains, it is not always convenient to use.  This is when a microwave heat bag really comes into its own, and whilst I have used similar products in the past I found this wheat bag to be superior in quality.  Before I have found that wheat bags have not stayed warm for as long as my trusty cherry stone heat bags, but the Pain Relief Cushion does stay warm for a similar time span and is well made.  Remember I use it daily and heat it several times a day, so it is very well used.  16906976_998625020269091_6683417726205034496_n(1)

I cannot claim that it gets rid of my nerve pain, but it certainly helps to ease it.  It has also been very helpful for the Ehlers Danlos join/soft tissue pain that I have all over my body – it was particularly good for my neck and regularly dislocating shoulders!  The pictures were taken on a “popped” hip joint day.  For those of us with monthly cramps, it is a great safe alternative to a hot water bottle!  I personally haven’t used the cushion as a cold compress.

The only piece of negative feedback came from my daughter with regards to the packaging.  She commented that in her opinion the flier would attract younger people to the product with a more contemporary, clean look – she is naturally artistic with an eye for graphic design.

From the time that I have used my Pain Relief Cushion, I would definitely recommend it as an aid to pain relief and will continue to use mine.

The products retail in the UK at  www.painreliefcushions.co.uk and in the US at www.ease-pain.com

The company can also be found on social media : TwitterFacebook and Pinterest

A Chronic Comparison?

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

 

 

 

Cloudy with a Chance of Pain

If you are anything like me this cold weather is causing you & your illness some serious grief!  My nerve pain has been off the chart today and the spinal cord stimulator has struggled to control it.

So…..If you live with chronic pain and haven’t already signed up for this easy research project, then please do……

https://cloudywithachanceofpain.com/blog/why-it-s-important-we-keep-studying-the-link-between-weather-and-pain

https://twitter.com/CloudyPain

As I strive for independence….

I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course.  We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away.  Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial.  It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.

This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey!  Car journeys are not easy for me, like I imagine for many with pain & disability.  The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion.  My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself.  Not forgetting the EDS.  The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe!  With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.Exeter

Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl.  One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations.  I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun!  She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself.  Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me.  So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!

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Cathedral green

She was probably right – I doubt that she would have been able to get me up again.

Exeter is very hilly.  Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled?  In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city.  The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting.  Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.

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Old Exeter

I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing.  In short, I might be able to enjoy a day out and actually have some more freedom.

There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month.  Any suggestions gratefully received!