Get ready for EDS awareness month!

The Ehlers Danlos Society has set a little project for the May 2021 awareness campaign.

This year it is a Social Media Challenge – one of the Acts of Awareness Challenges to raise awareness of EDS and HSD! Use the daily themes as prompted in the picture for your social media posts, photos, or videos, and use the hashtags #MyHSDChallenge and #MyEDSChallenge. ⁠

Learn more from their website :

Join in and help make the #invisiblevisible ❤️

What is EDS?

Firstly as of 2017 there are now 13 different types of Ehlers Danlos Syndrome, many being extremely rare! However now the gene mutations have been recognised it is possible for a patient to be tested in all variants apart from Hyper mobile EDS.

Due to the complexity of the condition, no two patients have the same two symptoms, which is why it can take many years to get a diagnosis.

When seeing your GP, ask for a referral to a rheumatologist to discuss your concerns and always write down and problems you are having, how long you have been struggling for and also make sure you write any questions you may have, those initial meetings always are a bit intimidating.

If and when you get a diagnosis it’s a positive thing, it means you have known something has been wrong all this time.

Life without Pain Medication!

After my decision last summer to stop my pain medication, I made sure I returned ALL the strong pain meds to the chemist so I couldn’t fall back on my choice to live a life opiate free.

Now whilst I admit it was a silly idea to go cold turkey, I definitely couldn’t have done it without my family who stood by me as I thrashed about, cried, became so desperate I didn’t know what to do with myself but now we are out the other side I feel it was the best and only way I could get through it!

How do I manage now? Very occasionally I will have the odd paracetamol if my head pain is too much, if my joints are killing me, I try and use a warm bath or compress, I have just learnt that the meds were numbing me as a person and not my pain. Honestly my pain is no worse than the day that i stopped the highest dose of fentanyl. I have just learnt how to manage it better. Also trying to exercise, to build up the muscles, to support the joints and to not let myself wallow in the game of self pity or chronic illness bingo, it isn’t a game of who is suffering the most, more a case of who is surviving as well as is feasibly possible?

I know I still have my good days and my bad days, but I have learnt that I don’t need a stomach full of poison to get me through each day. For now life is better 🙂

First my left, now my right 🙈 (shoulder)

As you know if you read my blog I had surgery on my left shoulder a few years ago, I had managed to injure myself whilst playing Wheelchair Basketball and it never seemed to get better. Post surgery I have no real issues with my left arm/shoulder apart from I struggle to sleep on that side, so I soon became a right sided sleeper.

One morning I woke up to find I was in the most excruciating pain, it appeared that overnight I had sublaxed my shoulder, waking up it had relocated and was just super painful. I tried to keep it moving but this proved impossible and I was worried I would end up with another frozen shoulder and back down the same route as my left.

After a number of days I ended up in A&E, the pain from the injury just too much and as I was triaged the nurse commented “that is still out”. Off to x-ray and when I saw the doctor he was so confused, my shoulder was in position for the image but seemed “out” to the eye. I was sent home with a sling and told to rest, at this point last year I was still on fentanyl and I was struggling with pain relief as I felt I was on the maximum dose possible, I was told to try Oramorph to help with the acute pain, this did nothing for me.

I gave up and called my GP, I told them about the left and how the right was just as bad if not worse and could they send me back to my wonderful shoulder consultant. After a few weeks I was called up and asked to attend my first re-visit to the Stanmore.

Upon discussion with my Doctor it was decided that my shoulders, love to sit in an “out of joint” position and I would need some intense physio to try and improve my posture and make my joints hold in shape. So back to the fabulous physio department also at the Stanmore. Over several months I would fluctuate between doing great and then crashing down, normally because I had pushed myself too hard physically. Thankfully the team at the Stanmore, knew me of old, I am all boom or bust and I needed to pace more, I was asked to attend an OT appointment and we talked about pacing, mindfulness and sleep hygiene. This was a turning point for me I knew my sleeping position was still causing me issues, so with her help, I began to get some rest, the mindfulness despite not usually being my “thing” I found quite useful, so I began to use the tips and tricks she had provided.

I then started to exercise regularly to help my shoulders gain strength. This was and always had been a huge problem for me, Late last year they administered a steroid injection into the joint as I was still a bit all over the place with pain, two days after that, my pain diminished from a ten on the scale down to a two, it would just twinge abit if I overdid things. I think this is where I was able to start my rehab fully as I could lift my arms up again, I could brush my own hair, something hubby had been doing for me for months.

As of the end of April 2021 I am formally signed off from both the OT and PT departments and despite having had an MRI recently to see if there are any internal issues, next it will be to see my consultant to discuss the last steps of hypermobile shoulder joints.

My Year In Lockdown

So we returned home on the day of UK Lockdown 1, 23rd March 2020. This was meant to be our trip of a lifetime, however a random virus seemed to throw a spanner in the works from Day One even without us realizing it!

Getting home itself was a major achievement and thanks to a great friend who ensured we weren’t deserted in Australia for three months or more.

Yes I was terrified!!

However the next issue was learning to live life, not only in this new “lockdown” but to try and keep ourselves busy and occupied daily.

As the government stated we could exercise for an hour a day, we decided we would attempt that! It quickly became apparent that my chronic pain and other health issues would tie me to the house, also called shielding. This affected my mental health quite severely, I was unable to see a way out, to structure my days and for weeks one day rolled into the next.

We tried to enjoy the odd day as and when allowed but I know I found it near impossible to keep my hopes and spirits up.

Getting out in our village

In August 2020 I received two pieces of news that would change my life forever, I was finally to become a grandma ❤️ this gave me the chance to turn my life around …… and bit by bit, day by day I feel although I am a work In progress, i can hold my head high and say I’m doing it so I can a better grannie for those babies.

So I hope to reflect back on the last twelve months since all this started for the country and for me personally

Becoming a Grandma 👵

Last summer we received the amazing news that not only our eldest son was going to become a Daddy, but my daughter was also expecting her first baby. Double the joy :). I suppose it was around then that I chose to be more aware and stop my pain meds. I wanted to be a Nanna who could hold her grandchildren and be trusted, not zoned out because I was full of fentanyl.

Both pregnancies seemed to go without hitch and our Grandson Arthur was born on 5th March this year, overjoyed doesn’t quite explain how we felt, the hardest part for us, was and still is, they live in the Netherlands and we can not visit, so until travel is allowed our time is limited to video calls and photos.

Our little AJ

24 hours after Arthur was born, my daughter had come for a walk with us and wasn’t feeling great, by the time we got home she realised something wasn’t right, she went home and called the maternity unit, we rushed her up there on that Saturday night and after four days of being in and out of hospital she was allowed home on the Tuesday, her waters had gone but they had administered steroids for the baby’s lungs. Now it would be a waiting game, the plan to get her to 37 weeks. At this stage on that Tuesday she was exactly 33 weeks pregnant! On the Thursday she asked if we could go shopping to finish packing her hospital bag, I agreed but explained it would be a short trip, i wanted her resting.

By the time we got home and without me knowing she was struggling with “pains”. I left her with a friend and came home, a few hours later I got the call to say “Mum I think this baby is coming one way or the other”. As her contractions progressed we received another call, this time her boyfriend, she was definitely beginning to struggle with the frequency and pain levels, I told him to call WPH. We heard nothing for a few more hours, next we got a face time and our poor girl was in full labour and “Just wanted Mum”. I felt so helpless, due to covid I couldn’t be there so it was a case of supporting her via these calls, all very 21st century.

At just after 3am on Friday 12th March, one week after her cousin, our second grandchild rushed into this world, Harper Ava June, wow what a week!

At only 1.8kgs our tiny baby x

Being a Nanny has changed my life for the better, each day I get to see my girls and then I have video time with my boys, I feel truly blessed in life and now I have a true purpose. Roll on 17th May and being able to travel again.

Two weeks after being born, she came home 🏡

My MRI Arthrogram (shoulder)

Due to the Stanmore become a covid site, my MRI was cancelled. Then I got a call would I be able to come up on 20th April to get it sorted.

Thankfully hubby drove me, I hadn’t considered how much pain I may end up in following the arthrogram.

I reported to the MRI reception on the day and was told, no you need to head off to x-ray, totally confused as to what was going on and why, I just did as I was told. I was quickly ushered in to an x-ray suite and told about what would be happening

First they would locate the joint, numb my shoulder, then insert the “big” needle and get the contrast deep into the joint. I can remember the initial pain from having the steroid injection and knew this wasn’t going to be pleasant, with hubby waiting in the car, I was super nervous and thankfully used some of the mindful techniques to keep me calm.

The initial process was easy, even the big needle was manageable, however once the contrast was placed into the joint I was having to hold myself back from pulling away and crying. It was like a vice was on my joint and the consultant carrying our the process did ask if I needed to stop. It got to the point that I felt like my shoulder was going to burst it was that full of liquid. Once he pulled out the needle I felt sick with the pain but knew I had to now get myself to the MRI suite and keep my arm and shoulder very very still.

Once in the metal tube I tried to blank out what was next I am not a fan of being stuck in a long machine but needs must. Thirty minutes in and the first set of scans were done, next I was asked to place my arm above my head and hold it for the next set, ten more minutes and this time laying still was a chore. I could feel my joint slipping and knew I could do nothing to help myself. Once it was all over they removed all the weighted bags and wedges so I could get myself up, first I had to relocate my shoulder joint into its correct position. Carefully I rotated my arm and felt it slip back into the correct position but it was now not a happy joint, so I carefully got dressed trying not to overuse the arm.

Once I had left the MRI suite, I felt this was a huge step in ensuring my shoulder was fixed once and for all, now to see the consultant soon, I hope?

Vestibular Rehab / Physio

It didn’t take too long for the first of many appointments to come through and my fab physio Nick and I were soon organising how I would manage my dizziness.

Autonomic dysfunction is so much more than me just fainting, I rarely blackout as I have learnt my signs and take the cues, to sit down on the floor, or just bend over double to get my head lower than my heart. I can remember years ago before I knew what these signs were, I would often just keel over. This is also similar for my dizziness, it isn’t related to my PoTs more my failing system. So this course of treatment was to re-teach my brain how to not react badly to sudden movements.

I was sent an online work system and logged on to follow the simple instructions, as with any exercise it was a case of keeping at it, practicing my head movements twice a day and albeit sometimes it may have looked odd, it was soon apparent that the movements were actually teaching my brain and eyes how to cope with the side to side action. Up and down was a little harder due to my neck/shoulder pain but I simplified the actions and after several weeks I decided that it was time to just stop the medication.

I thought coming off meds would be harder, but after my battle with Fentanyl withdrawl this was a piece of cake. Despite my brain missing the medicine, I just kept going with the exercises and knew that any set backs would be minor, in the grand scheme of things.

I had chosen to adapt some things required of me, instead of starting the program standing, I did it sitting down and then once I felt I “shouldn’t” fall, I progressed myself into the stand up position.

Finally earlier this year I had the sign off from my physio, it was decided that I was managing the program well enough to go alone. No longer stuck on a medication that I really didnt need, I knew that it would only be hard work and dedicating time to this vestibular physio that would keep my symptoms at bay.

Now to see my consultant at some point in 2021 and find out what is next?

Life with Tinnitus (being fitted with white noise aids)

For years I have struggled with ringing in my ears, known as Tinnitus. One of my specialists had decided that maybe I needed to have some Ear Nose and Throat input to see how the autonomous disfunction may be making the symptoms worse. The appointment was initially to attend Guy’s Hospital in London, however once lockdown hit, this was changed to a zoom call for my first appointment.

The first call we discussed my problems and how I was not only struggling with headaches but had a dizziness issue for which I was taking a medication. We spoke about the tinnitus and it was agreed that with a referral I would have some check ups for my hearing. After a couple of months my appointments started to come through, roughly last summer. I had a CT Scan and then a Cone Beam CT Scan, which was to look in depth at the structures around my jaw, ear and nasal cavity. Finally I went along for a hearing test and to discuss the fitting of the white noise aids.

Everything was done with minimal fuss and to be fair I felt at ease attending the hospital during such difficult times, I felt a tad guilty as surely they were busy enough without having to deal with routine stuff like me having an annoying sound in my head.

They never wavered in their support and I finally got the call that my aids were available to me and one final appointment would be required. Fitting them was easy, I was given a series of sounds to listen to, to decide what noise I would prefer to override the constant whistling in my ears, new batteries supplied and a cleaning kit and I was finally allowed to leave with my new bits of kit.

I have struggled to use them on a day to day basis, mainly because I am surrounded by noise 90% of the time, at night is when I really have issues and this is when you are not allowed to use the white noise aids. So it is a fine balance of when do I use them and when do i not?

Finally with the sign off agreed I was told my next stages would be to have some vestibular rehab, in the hope that I would soon be able to manage my dizziness and stop the medication. Everything seemed to be going really well, it was just another waiting game for my appointments.

Managing without Botox

When we returned to the UK in Feb 2020 I had a round of much needed Botox for my headaches, I felt that this would get me through stage two of the break away and keep my migraines at bay!

However I wasn’t to know that this would be my last treatment, throughout lockdown. After the usual 12 weeks I could tell the Botox was running out of my system and questioned how I would be able to cope? I believe this daily head pain contributed to me feeling so low, between my consultant and I, we had worked for years to get me back on an even keel and then due to Covid I wouldn’t be able to have my treatments. I finally got to the point where I could no longer tolerate the pain and reached out to my Doctor and he advised me of a treatment that had been approved by NICE and I could be sent it. Of course I jumped at the chance, anything to try and alleviate the pain that was no back with avengeance.

The new medication was called Ajovy and with the help of a district nurse who attended our home, despite lockdown restrictions, hubby was taught how to stab me once a month. Over the following three months hubby and I gave it our all, I tried to tolerate any issues I had but I felt this one wasn’t for me. My head pain wasn’t reducing!! Once again I contacted my consultant and advised that I wouldn’t get the second round of medications and I would just try my best to live with the headpain until such time as Botox and Hospitals were back available to us.

Late last year I got the much needed call, my consultant could see me for the new round of treatment, it was at a smaller hospital, the main one being Covid hot. So along we went as his final appointment of the day and I was given the 30+ needles to help me reduce the pain and anxiety of suffering. The first round as expected didn’t get rid of the pain 100% but I saw a marked improvement, second appointment came around earlier this year and this time it was back to our main hospital. With new one way systems in place, we managed to navigate the new route into out patients and once again, despite the injections really hurting this time (unusually) I got through my next round of treatment. Over the week that followed I began to see a marked improvement and felt I was finally back on the road to recovery, post missing botox!

As the pandemic settles, we are hoping the regular treatments are back to stay and I can keep my pain to manageable to levels, being a headache / migraine sufferer is so much more than just taking a few pills and hoping for the best. This has become an essential