To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”. I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.
So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:
1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?
Guest Post: ‘Claire’s Story.’
January 1, 2019
Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)
I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds
The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue. Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.
POTS is condition that affects the circulation on changes in movement, temperature. When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out! This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.
Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.
EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage
My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic). I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).
The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history. Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms. I was given a diagnosis very quickly, but no support or follow up – was told that my management needed to be local.
But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42
To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!
Thank you so much to Bethany for having me as a guest blogger!
A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.
I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton. I think you will agree her own Versatile Blogger award is very well deserved. Thank you, Nikki, so much for nominating me!
1. If you are nominated, congratulations – you have been awarded the Versatile blogger award!
2. Thank the person who gave you the award and include a link to their blog.
3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.
4. Nominate those 15 bloggers for the Versatile Blogger Award.
5. Tell the person who nominated you 7 things about yourself.
At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come. I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post! So here goes…….
I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum. It can affect any body part that has collagen/connective tissue. I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain. Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
I was a nurse in a former life. It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration. My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years. 2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts!
I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to book clubs and will read just about anything. I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
I am a mum to 3 young adults aged 22, 19 and 16. This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older. I guess my parents would agree!! Let’s hope that the next 12 months are less of a rollercoaster….
I love dogs. All shapes, sizes and colours. I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum. He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire. He is completely in tune with my bad days and is very protective of me. We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits. Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!
I make celebration cakes. Not professionally, but for friends and family. I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing. The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!! The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby! Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching! These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”. We are both looking forward for the next season of Dark to be released in March!
There you have it – seven things about me, with a bit of looking back and looking forward thrown in. Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?! I am happy if I can go into the new year with some positivity and hope!
Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t. You are all still versatile!
Last month I was fortunate to be invited to attend a special day at Gatwick airport to receive information about the Accessibility plans that are in place for travellers. We – hubby and me – joined a small band of fellow EDSers (Ehlers Danlos syndromes) and other families with mobility issues, autism, Alzheimers and various “invisible” chronic health problems in order to experience “a practical overview of airport processes before actually travelling”.
Travelling can be a stressful experience at the best of times, but add a disability/special need/illness into the equation and this stress is magnified 100 fold. Accessibility issues affecting wheelchair travellers have recently hit the UK national press with the stories of BBC journalist Frank Gardiner and athlete Justin Levine. Each man arrived at his destination to find that his own wheelchair had been lost, resulting in Mr Gardiner sitting on the plane for an additional 90 minutes after landing at Heathrow and Mr Levine rejecting offers of an attendant wheelchair at Luton. Whilst Gatwick and several other UK airports have previously run Accessibility days, this particular session could not have been better timed in order for the airports to improve Accessibility profiles.
Each family was allocated a time slot and we were met at the Virgin landside airline desks where we were checked in and given the recently launched sunflower “hidden disability” lanyards. The distinctive green and yellow lanyards are to allow staff to easily identify travellers who may need additional assistance, but might not have an immediately obvious disability.
Chronic pain, autistic spectrum disorders, Alzheimers and dementia, fibromyalgia, chronic fatigue syndrome, Ehlers Danlos Syndrome, IBD/Crohns/Coeliacs, mental health disorders are just a few of the many conditions that might benefit under this scheme. Members from both the police dog handlers and the border patrol were present to welcome us but it was their beautiful dogs who stole the show. Eighteen month old springer spaniel pup Gracie was a personal favourite of mine!
Do you know that there is an Accessibility and Families’ check in and security? The whole process for the average traveller has changed so much in recent years and it can feel that everyone is wanting to check in at a million miles an hour……electronic check in from home, travelling with hand luggage only, business travellers wanting to get from A to B in the least time possible. How does it feel if you take a little more time than the average person, if your child doesn’t understand what is happening, if anxiety turns into a panic attack? We were assured that the Accessible and family security can be used for anyone who needs a little more time, space and understanding. I wonder how many of you have used this facility? Please share your experience!
Last weekend Virgin airlines and Easy Jet were our hosts for the day, but I believe that other travel providers have played the host role in different locations around the country. This was my first time to go through airport security since having my spinal cord stimulator implanted for pain control and in the same way that I am not able to go into an MRI scanner, the magnetic fields in the security scanners prevent me from going through the arch. Like a pacemaker, the magnets in both devices would cause damage to my battery/programmer needing surgery to remove and replace the device. I carry a medical alert card like others in my position and whilst my condition is now “visible” due to my wheelchair, for many with chronic pain and a similar implant, it would be impossible to see their chronic condition. The security staff responded well to my needs and as hubby put my bag on the scanner and took himself through security, I was taken round the other side of the scanners and whilst remaining in my chair, a female office carried out a simple body search. I passed and didn’t set off a single alarm!!
First stop – the “V” room. This is Virgin Holidays’ new lounge in the North terminal which is for the use of Virgin customers booking a Holiday/Flydrive Package – it can be pre booked or booked on the day for each passenger. We were treated to hot drinks and a tour from very attentive staff who are eager to please and answer queries. I know that this is part of their jobs, but we were impressed by the welcoming demeanour, general knowledge and the care shown to us.
If you are not on a Virgin package or do not wish to pay to book the lounge, Gatwick North terminal has a newly opened Accessible “Quiet” lounge area located within the departures lounge and shopping area. Here it is possible to sit in more comfortable seating, away from the crowds with screen information to monitor your flight and yet still be close to the amenities and eateries in the departure lounge.
I was using my own wheelchair and pushed by hubby, but there are many of you who don’t normally use a chair, yet walking through the airport prior to boarding your plane is just exhausting. If you give the airport notice – 48 hours – it is possible to be helped by staff with a wheelchair, as some of our group did for their tours, or to make use of one of the accessibility buggies that you will have seen speeding through the airport. My advice – don’t be too independent and insist on walking if this burns you out before even setting foot on the plane. I have always been the world’s worst for doing this, but accept now that pride really can come before a literal fall!
We were taken to the Sensory room next – the first area of its kind in a UK airport. It is well recognised now that special sensory lighting, music and surroundings can greatly enhance senses and communication for a wide variety of sensory abilities. My limited experience (when nursing) brought me into contact with such areas in children’s hospices and hospitals. A room of this type can be extremely helpful for both children and adults with autistic spectrum disorders, physical and mental disabilities – I include dementia and Alzheimers here. The room is airside and only for use by those passing through security – a 45 minute session can be booked at the special assistance reception in the departures lounge. On the day youngsters in the room appeared to be having a great time, but there were few adults with disabilities when we had a quick “peek”. There is a variety of soft play cushioning and this is geared towards those able to sit on cushions and beanbags. It is important to book ahead as there is an 8 person limit. I think that the premise is fantastic and it is a very welcome addition to the airport experience – suggestions to add to this are:
for a further focus on use by adults;
to create wider aisles between the soft play areas for wheelchair access – the space is limited;
to consider how different groups might relate to each other – adults, children, physically disabled, autism spectrum disorders, etc;
to ensure that the knobs and buttons on the activities are able to be accessed by those with hand problems;
to consider in the future expanding the existing room or have several sensory rooms to cope with the high demand that the facility will undoubtedly have! Disclaimer: Please note I am not an expert and do not have autism
For someone like me who struggles with walking and stairs, the thought of using steps up to a plane is akin to climbing a mountain. It is encouraging to know that if an aircraft is using steps rather than a jetty boarding system, Gatwick airport has a fleet of German Bulmor transporters that wheelchairs can be strapped into and lifted via a hydraulic arm directly to the door of the plane. This allows the passenger entry to the plane in their own wheelchair to then transfer directly into their plane seat. We enjoyed a short ride in the Bulmor and the experience of the cabin lifting and lowering, all whilst I sat in my chair. For younger members of the party there was an opportunity to board the huge airport fire engines and to have a go at operating certain controls.
The part of the day that I was most excited about and also feared was boarding the plane – my greatest anxiety over the years has been the thought of feeling trapped in an aircraft seat and my back pain becoming uncontrolled. I can move when seated on my sofa, in a restaurant or even the cinema, but sitting in a car or a plane is a different story. Unless you have experienced chronic nerve pain, it is difficult to explain what may seem to be an irrational fear of an exacerbation of this pain and being unable to do anything about it. I was able to remain in my seat up to the doorway at which point I got up from my chair and transferred into one of the first rows on the plane. The Easyjet cabin crew were keen demonstrate that they can offer assistance and a comfortable flight to any passenger with accessibility needs.
Whilst hubby chatted with the pilot in the cockpit……
I was told about booking my seat in advance – it is advisable to pay the extra to select your seat for leg room, the aisle, to be near the loo etc etc – alerting the airport and the airline of your needs 48 hours in advance, and that my wheelchair would be stored in the hold after I have transferred to my seat. Tip: take your seat cushion onto the plane as it is likely to be lost in the hold! The loss and damage of wheelchairs has been in the media recently and is a very real concern for many wheelchair users – one lady cited the issue of “which end of a flight did the damage occur to her chair?” as no one would take responsibility. No easy solutions to this one as yet. The current policy is for accessibility passengers to board the aircraft first, in order to have time to settle and as much assistance as needed without the stresses of other passengers. Once in the seat there is a small onflight wheeled chair (similar to a fire chair) for those needing assistance to move about on the flight, go to the loo etc. I did find the seat comfortable and was in the area with more leg room – I don’t believe that I or others with EDS/chronic pain/arthritis/ fibromyalgia etc would manage with less leg room and the angle of the back of the seat is very important too. The new EasyJet seat backs are fixed and I am pleased to say that they are not in a too upright position, but I would be unable to manage in a fixed seat that was very upright as my SCS would be cut off due to the position in my spine.
I asked about facilities at destination airports and the staff were very honest. Apparently there is a European standard for Accessibility arrangements but they are open to interpretation and this means that they will vary from airport to airport, country to country. This is obviously the case when flying elsewhere in the world too, so the best advice that I can pass on here is to fully investigate your holiday plans, journey and the accommodations made at your destination prior to any bookings!
EasyJet have an Accessibility and Assistance manager, Celine McGuigan who is informative and very keen to make airport travel accessible to all. She is also notably keen to understand the needs of the Accessibility community from those with very visible disabilities to invisible problems/illnesses – in fact she has made staff, including those at a senior level, spend time in a wheelchair in order to focus minds on accessibility issues! The young members of cabin crew are also to be commended for their knowledge and enthusiasm to help without ever being condescending or frightened to ask me questions.
Feedback from the visit:
just how accessible are the aircraft toilets? They are very small and is there room for the small wheelchair and a helper to assist with a transfer? (I am aware that this is an area up for discussion around the design of both aircraft and trains);
people with allergies, mast cell activation syndrome and similar can be very sensitive to scents – some have experienced problems with the scents used to refresh the cabins and I know that the staff were going to look into this matter;
for staff to be aware during a flight that with conditions such as EDS, joint pain and cramps are a common problem and the passenger will undoubtedly need to stand and stretch;
for many the standard seats do not provide sufficient room, yet the seats with more “leg room” can come at an extra cost which can be difficult to swallow for those on an already reduced income and/or families with young children
I know that they have been in the media, but to continue to highlight the accessibility lanyards and the fact that many adults and children with “invisible” conditions will be using them; work with the community who will be using them and listen to feedback regarding wearing a lanyard and the design.
I can only congratulate all the staff involved for such an informative and practical day at Gatwick airport. More of these days across the country would be a huge benefit to so many people and the comments that I have seen from other groups have been very positive. My own fears have been put to rest and whilst I am under no illusions that air travel for me personally will remain tough and very tiring, and of course I still have some concerns, I do now think that I can do it.
So come on hubby….where are you taking me?!
Please note this has been written from my personal perspective
I’ve been struggling to write, to take part in blog shares or blog parties. I don’t know why….brain fog, the constant nagging pain in a near permanent dislocated shoulder, stress from an adolescent, lack of pacing, all manner of things could be blamed….I just don’t really know.
Pin for later
Hubby was clearing out earlier this week and came across some DVDs that he and my brother compiled years ago from my parent’s camcorder. You must remember the black boxes carried by all self respecting tourists about 15 years ago? Unlike the traditional camera with a film to be exposed and turned into photographs, the stream of moving images needed to be converted from a small cassette into a format suitable to be viewed on a home system – usually a DVD player by this time! We had forgotten we even had them but, when the writing refused to flow, I have spent several afternoons watching short clips from 12 – 20 years ago.
A wonderful trip down memory lane from the eldest being an inquisitive toddler – did you really let him use let hammer and hit himself, Dad/Grandad? – to holidays abroad with all three kids, to Christmases where departed family are still very much alive and laughing alongside the rest of us. For me it was my young children that I was watching closely and shed a few tears when my lovely Grandad appeared with the then 4 year old politics student discussing a Ninja turtle gift for Christmas 2003.
But hubby told me today that he struggled to view the clips as he was watching me! Why?! I wondered – what was so interesting about me being mum….pregnant, with new babe and toddler, unwrapping presents, pushing a buggy, going to work. Hmmmm – that was it! He saw me – how I was, always on the go, winging it most of the time, particularly around my back problems, pain and EDS. Walking, running, playing, dancing, swimming, working.
A particularly poignant moment was hearing our lovely girl’s voice, aged 2, telling Mummy and Daddy to cuddle as she zoomed the camcorder in on us – with a little help from her brother. On hugging a little voice shouted out “Kiss!!” – we were on holiday in France and this was our last holiday abroad as a family as chronic pain was soon to strike.
Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.
Whilst I had not really seen myself, much less watched myself (who likes watching and hearing themselves?), hubby saw the person I was and remembered the person I became. The woman turning 40, riddled with pain and opiates, puffed up with drug weight gain and lunging into reactive depression. The woman struggling to be a wife and mother. Sometimes it is easy to forget that this journey with chronic illness is not ours alone. Our nearest and dearest live it with us, the good with the bad, the happy with the sad.
When I mentioned her dad’s comments to the lovely girl, I did feel sad that her answer was that yes, she noticed it too as she can’t remember me before my symptoms took over and my general health deteriorated. The mum on the film looks like me, sounds like me but is almost a stranger. Or is she?
Hubby had the final say by reminding us all that it is possible to move beyond those awful middle years. He says that I am me again! It sounds a bit dramatic doesn’t it?! Accepting my situation, being pushed to come off the regular opiates in order to have a spinal cord stimulator and keeping as healthy as possible(!) has been transforming.
Whilst I will never be that thirty something who seemed to lose so much almost overnight as she turned 40, now as I look toward turning 50, I think that I can say that I am ME again. I look in the mirror and as I look past the grey hair, the lack of sleep, the metal spine, the splints and mobility aids, I feel like myself and so I see MY reflection once more.
Round and round, up and down. I seem to be moving along in my life but never getting anywhere! When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination. Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.
But my journey continues round and round, up and down as the ride continues relentlessly day in and day out. When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination. Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size. He has a mane, a tail, hooves and he can gallop at great speed. To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.
My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to. I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.
The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare. Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!
OK not quite a film star! I might have mislead you slightly in the title, but I hope it got your attention. Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”! I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!
We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.
Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features. If you watch closely you might find yours truly in the mix!
Please take a look – bookmark for later – share with friends and family. Just getting the name out there raises awareness for us! Details of fellow zebras can be found on Jenni’s channel.
This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!
Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder), also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
Very….slightly less so now than as a teen!
Wheelchairs, walking sticks, crutches, motability car
Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
For surgeries, pain management, gut management
Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough. Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me. During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so! There are enough screws and filler in there to hold up a kitchen cupboard – IT ISN’T SUPPOSED TO MOVE, WOMAN! We agreed to part company.
I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)
I will save you from more wittering today and publish the second half later this week!
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob