Thailand and mobility

Update: All about me

Well it’s been 8 years since I started my blog. When I started I was 42 and my children were 19 17 and 14. Now I’m 50 and they are 27, 24 and 22 and so much has happened in those 8 years. To be fair there were times when I didn’t think I would reach my 50^th birthday but I have and I have been fortunate enough to spend my 50^th birthday in Thailand.

I have already written a blog about travelling with disabilities but this time it was a very different ball game. The last time I used special assistance, I didn’t use my own manual wheelchair. This time I travelled with my own electric wheelchair. I have read multiple counts of peoples chairs getting damaged in the hold and having to

accept insufficient replacements, that’s scary so I took precautions to minimise such events. I told my booking agent that I wanted to wrap my chair in bubble wrap at the gate, and would there be any issues doing so. She put that request to the airline so they were aware of my wishes and said it wouldn’t be a problem. I had two flights there and back to prepare for, London to Bangkok and a week later Bangkok to Koh Samui, then Koh samui to Bangkok and then back to London. I had to give the specs of my wheelchair to both Eva and Bangkok airways as my chair has two Lithium batteries which cannot go into the hold, only in your hand luggage. There was a lot of careful planning and preparation for this trip.

My mum happened to have a very large roll of bubble wrap from her move in her loft so, luckily, I didn’t have to buy any. The night before we left we (not me, but my family) cut 8 pieces of bubble wrap to wrap the chair vertically and horizontally. I carried two in my lap and the rest was squashed into a suitcase and two rolls of brown tape. It was well worth the effort to see my wheelchair brought back to me at the airplane door how I left it!

The special assistance across all the airports was second to none, everybody was quite fascinated with the wheelchair for some reason, surely they’d seen one before, but hey all they were concerned with was that the lithium batteries were in my hand luggage.

Thailand is not very wheelchair friendly and I knew this, but to experience some of the challenges I did was very emotional, I even broke down one day in the street. The overwhelming feeling of being unable to do something as basic as get across a street was on a different scale. My accommodation in Bangkok was accessible, and I’m lucky that I can actually get out and navigate steps etc. But Bangkok has over passes to cross very busy roads which are not accessible at all. I attempted to climb stairs up one side and down the other and I felt like I was going to pass out. My chest hurt so much I had to stop every few steps. Even when we tried to cross at the lights, traffic did not stop when the green man showed to walk. I had to literally put my hand up in a gesture to stop! We got taxis everywhere and not all taxis could accommodate the wheelchair properly. Most normal 5 door taxis have gas tanks in the boot so very little space, one taxi used rope and other occasions we put it on the back seat. Transport from airports and via hotels were suitable for the wheelchair.

Even when I booked my stay in Koh Samui it mentioned Accessibility entire unit located on ground floor, but of course there is going to be stairs somewhere… The pavements are at times, impassable because of damage or motorcycles parked up but thanks to my amazing hubby we navigated our way around. Even with these challenges, nothing could take away from the fabulous and memorable time I had in Thailand.

Public Transport

So today for the first time I travelled on the train with my wheelchair to Kings College Hospital. I’ve heard a few horror stories of very upsetting experiences had by many disabled passengers. I chose not to do this alone… Every step of the way I was greeted with help, the sun was out, and ended with a lovely lunch. Did I just get lucky or is this normal for Southeastern Rail? Why can’t all journeys be just as smooth…

Wishing myself luck

My beautiful daughter

Visible staff acknowledged my needs

Not gonna make that gap!

Not tucked away in some cupboard somewhere

Guided me to the accessible carriage

Lots of space

Large toilet space but got caught out with feeling queasy standing in there when train started moving🤢

They called through to the station to expect me and they were waiting

Lift in working order

Return journey ready and waiting

Back in one piece.

Clinical Trial

Over the last couple of months, I have been accepted onto a clinical trial because I have been diagnosed with nerve pain after surgery. (Also called, Post-Surgical Neuropathic Pain, PSNP), which is moderate-to-severe in nature and has lasted for at least 6 months.

Chronic nerve pain can be caused by nerve damage during surgery. The most common nerve pain symptoms are numbness or tingling, shooting or electric-shock pain, sensitivity of the skin to touch, or warm or cold temperatures localised in the area of surgery.

The purpose of the study is to demonstrate the safety and effectiveness of Qutenza (Capsaicin 8% topical system} compared with Capsaicin 0.04% topical system, in participants with moderate-to-severe PSNP. A topical system means that the medicine is contained within an adhesive patch which is put on the skin. The medicine is absorbed through your skin. The study will also assess whether long-term use of Qutenza is effective, safe and tolerable compared with Capsaisin 0.04% patch. Capsaisin 8% topical system is approved to treat lasting nerve pain in the skin.

The Capsaisin 0.04% topical system is used as an active placebo comparator, which means that it is not expected to have a significant effect on nerve pain but it is expected to cause a sensation during application similar to Qutenza. Neither myself or any or the study staff know which treatment I am on.

 I’m very fortunate that the clinic is 15 minutes from my house so don’t have an issue with travelling. The screening process was long and intense and very thorough, my GP is aware of what I’m doing.

I have had 3 visits so far with the last visit lasting 4 hours. I wasn’t in great shape on that visit which was to apply the patch, but I was made comfortable and well looked after. The team are wonderful and have made me feel valued. I have been given a mobile phone to complete an e-diary daily with my pain levels. One of the criteria for being on this study is to not take any opiate medication, or very limited (no more than 3 days in a row). I’m happy to say I have managed so far not to take any but time will tell. I have to provide a urine sample on each visit and guess what, I’m allowed to continue taking my cannabis medication! I overheard the lab technician tell the doctor my urine was positive for THC, she said yeah that’s fine, imagine… By the way I wouldn’t partake in this trial if I couldn’t use my medicinal cannabis.

After having a neurological/sensory examination with various devices/methods, they drew on my neck with a black marker and traced the shape to make the right size patch, all very fascinating. I personally have Capsaicin cream 0.75% at home, so very familiar with the effects but I hate using the cream. Its lethal if you get near any delicate parts and I just can’t be bothered with that. I’m excited to think in the near future a patch could be available.

Before the patch was put on I had to sit, well in my case lay, with numbing cream on the area for 40 minutes, the timings for everything that is done to me is very precise. Then after that was removed the patch was left on for 1 hour. I had to wear a mask and protective goggles during the application process. During that 1 hour, the pain I was feeling did reduce quite a bit and after it was removed the first 5 minutes I felt fine. Then the heat rose up out of no-where and my neck was burning. A cooling pack was ready and waiting for such a reaction. I’m happy to be part of something positive for future treatments for people with neuropathic pain.

Lessons learnt

I have had 14 surgeries many of them major, apart from a damaged sciatic nerve from herniated discs, this surgery to remove a lymph node in my neck (suspected Lymphoma) seemed simple enough. How wrong was I…

Area on my neck where the sensation is abnormal and painful

Numbing cream before patch application

Knackered with being fussed over

Protective gear for application. Gauze was extra padding

Ahh cooling off with cold pack

Autonomic dysfunction & ‘Long Covid’

An interesting discovery was brought to my attention following my Cardiologist appointment.

The whole point of the visit was to close the door or not…, regarding my Pericarditis episode following Covid. We sat and talked about what I have been going through for the last few months.

The chest and upper back pain has significantly improved but the breathing and heart rate are still a big issue. Since I came out of hospital in January, I have noticed my stomach has been very bloated. Now I’m very used to bloating, but this has been on another level. Picture 9 months pregnant! I know what it’s like to be constipated and I’m used to having that under control, but it feels like my digestive system has slowed right down meaning I’m not expelling waste naturally.

I spoke to my GP about this a while ago and he suggested taking some charcoal tablets which are known for its ability to remove toxins/poisons from the body. To be honest I was pleasantly surprised that he suggested that, he even asked me to report back to him if they helped as he has been recommending this to some of his patients with stomach issues. To be honest I didn’t notice any difference with the bloating but I’m still taking them for additional benefits.

After having a normal ECG and normal-ish BP we talked further. He told me he believes I am describing an Autonomic dysfunction. He opened up google and proceeded to show Collin and I, medical papers written about Autonomic dysfunction & post-covid syndrome or Long covid. Three systems of the body were repeatedly mentioned:

• Respiratory – The respiratory system is the network of organs and tissues that help you breathe.

• Cardiovascular – The cardiovascular system consists of the heart, blood vessels, and blood

• Digestive –  The digestive system is made up of the digestive tract and other organs, such as the liver and pancreas. Including the oesophagus, stomach, and intestines — that runs from the mouth to the anus.

The good thing is these issues are being acknowledged, the sad thing is no-one really knows how long the body takes to right itself. I have been told multiple times, give it a few more months as progress is being made. I have sincere empathy with healthy individuals who are suffering terrible symptoms of Long Covid. Working, physically fit individuals whose lives have been turned upside down within these last 2 years. For me, it’s just one more thing to take in my stride and I’m handling it.

Lessons learnt

Sometimes I want to rush my healing, but I keep getting reminded, there is no rushing this.

Colour blind

Something I have to get off my chest. After 30 years of trying and wearing different medical aids, why have I not yet seen things designed for darker skins. Whomever are manufacturing medical aids simply just don’t care. Is it that difficult to have a selection of colours that compliment peoples skin tones across the board? Sometimes we want to be discrete when dressing up to go out, it’s not every day we want to wear black, white or bright colours. The closest I have got to my skin tone is a coffee colour. I’m talking about things like:

NECK COLLARS

ARTHRITIS COMPRESSION GLOVES

WRIST SUPPORTS

KNEE BRACE

BACK BRACE

What if one wants to wear a low back dress or something that shows midriff? Maybe a back brace closer to one’s skin tone would be great. Just because we have disabilities doesn’t mean we don’t care about how we look. When you’re wearing a skirt or shorts, maybe you would prefer not to wear a black knee support drawing everyone’s eyes to the fact. Don’t get me wrong I don’t expect to see 50 shades of brown but it would be nice to have some choice don’t you think?

This is the type of discrimination that the majority of the country wouldn’t think about. Unless you’re in it you wouldn’t see it or think about it, so I’m talking about it, that’s the only way we can highlight changes that need to be made.

Lessons learnt

If anyone has discovered somewhere where one can buy medical items for people of colour meaning darker skin tones, please let me know so I can share.

Coffee colour

Beige

Has Medical Cannabis stopped working?

The last 3 months recovering from Myopericarditis has been harder than I could have ever imagined. Each day dealing with being out of breath just talking, or have your heart rate spike to over 120bpm just to go to the toilet. After visiting the hospital with severe chest pain and Tachycardia a few times, I have been told everything is fine from the tests being done, but I still need to see a Cardiologist. I am finally starting to see an improvement with my breathing and heart rate, hoping it will continue.

The reason for this blog is to talk about where I am regards to Medical Cannabis. Many of you know my journey, and it’s now been 19 months of continued use. It took 6 months to actually notice my pain levels had been drastically reduced. It felt like a miracle, until Covid hit…

I left hospital on the 6^th January with more meds and a new set of challenges to contend with, I have been in a different world. But what I didn’t realise was the fibro pain becoming more and more noticeable, until I noticed… To a point where I’m actually realising the Cannabis is no longer helping, I honestly believe that the Covid infection and the post complications have literally set my body back to square one! When I say square one I mean to the beginning of my Medical Cannabis treatment. It took 6 months like I said to see a significant difference, that’s a long time to wait for something to work and a lot of money! Is this really happening?  

Whilst I was feeling a lot less pain I was able to reduce my THC levels, what was the point in taking that same dose if I didn’t need to. Plus, it started having more of a sedation effect than before. I didn’t really have a choice but to reduce it because I was sleeping too much. Do I continue and see if I have to wait another 6 months? Is this just the longest flare ever and I need to stop over analysing?

I am really looking forward to my next follow-up because I have a lot of questions that need answering, if they can be answered that is. I’m at a crossroads with this journey, and wondering if anyone has experienced anything like this with their Medical cannabis journey.

Lessons Learnt My last visit to A&E/ ER with severe heart and upper back pain and tachycardia, resulted in all tests clear of inflammation, and infection. Has my central nervous system decided to memories these new symptoms in such a short space of time? Or will the Cardiologist pick up anything with further tests? Time will tell. #Fibrosucks   https://www.channel5.com/show/how-to-live-with-chronic-pain

Covid and Me Disclamer: This blog contains images of medical interventions

I always had in the back of my mind, how would I cope if I caught covid? on top of my usual challenges. I had increased my supplement/dietary intake over the last 18 months but at the end of the day if you’re going to get it, you’re going to get it. One evening I was laying on the sofa and just started coughing, nothing crazy but as I rarely have coughs and colds I was suspicious and went to bed. The next day I could not get up, I felt awful, bit like a fibro flare, my body hurt from head to toe. As my fibro pain is now under control it was an intense shock to my system. I took a LFT test and it was negative so that was that. Then came the shivers and the sweating and the horrendous cough, the next day I tested positive that was the 30^th November 2021. The next 6/7 days were a blur but I do remember by day 8 I was feeling better, I just had a niggling cough.

The week beginning the 13^th Dec, the Monday I managed to get to my physio appointment but by the time I got back I knew that that was probably a push, I was panting and breathless and that was using my wheelchair! The rest of the week my health just deteriorated, I was breathless beyond belief and my voice was barely recognisable as me. I was so upset because we had booked a family cinema trip which I had to miss. The following week I went to A&E where I was treated with a nebuliser and sent home with steroids and an inhaler. Then the chest pain came…we got through Christmas with 2 more positive cases in the house, lets just say it was eventful! By the 29^th I was back on the phone to the out of hours’ doctor who prescribed more steroids, antibiotics and a mask to use with the inhaler. Well after using the inhaler with the mask the next day my pulse rocketed to 130bpm and the chest pain was too much and an ambulance was called for me, now the 30^th…

I didn’t have to wait long at all, it all happened very quickly, I was assessed and bloods were taken. They were so busy and there were no beds so I was wheeled into the waiting room where I sat for 3 hours before I saw a doctor. I was immediately rushed round to AMU (acute medical unit). Whilst having every test under the sun and an infusion of Phosphate and potassium, the doctor told me it’s possible you’ve had a mini heart attack and gave me the appropriate medication. She was not a cardiologist and therefore needed the cardiac team to assess me. By this time, it was about 1am and I was so tired and very disorientated but couldn’t sleep with such bright lighting and endless monitors bleeping, people screaming and the endless need to pee. Friday the 31^st and now mid-afternoon with no sleep I was finally moved to a ward. Apparently I moved again after that but have no recollection. I spent 6 further days on the cardiac ward being treated for Myopericarditis. I was told I could stay a further 2 days because I was also in a flare by one doctor, then another doc said no, we need the bed. The beginning of a 3-6-month recovery… I’ve cried enough and finally got my head around excepting what is.

Lessons learnt

GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE

COURAGE TO CHANGE THE THINGS I CAN

AND WISDOM TO KNOW THE DIFFERENCE.

Nebuliser

Making myself comfy whilst waiting

Recliner chair waiting to be admitted

Taking blood from an artery is hell on earth

Being treated on AMU

Struggling to breathe

My hypersensitivity to light and noise was turned up to 100! Even my dark glasses couldn’t help me.

Extra padding for a very painful cannula. The one further up fell out!

Bruising taking blood

Bruising from blood thinners

Staff gave me a shield. Wards defo need dimmer lights

Constant monitoring

Defo needed my own pillows!

Pissed off and missing my people

My new best friend

Good bye 2021

Discrimination

When I started writing my blog in 2014, I wondered if I would have enough content to share with you all. I soon realised that was silly because I do have a story to tell, and I continue to learn more and more about myself and the world around me. This topic I want to share with you, because this cuts deep to my core. Recently I was given the opportunity to apply for a job I thought I would be good at, a Test & Trace call handler. It was full time, work from my bed etc. but I had no idea if I could handle it. I haven’t worked since 2007 as a teaching assistant which I had to give up as it was just too taxing on my body and my home life was being neglected.

The training for this job was 9-5 5 days a week, and after the second day the fibro flare kicked in, and I questioned whether this was a good idea. I was actually enjoying most aspects of the training, but it was fast paced and I had to ask one of the trainers to slow down during our Teams meeting. I tried sitting on the sofa, that didn’t work so I went back to my bed to work. I passed all the assessments that was required for this job with scores of 80-92%.

Then the job started… after the second day I realised I just couldn’t carry on at this pace, I went to bed in tears, I feel quite tearful writing this because I hate letting people down when I commit to something. From top to bottom my body was screaming at me, my eyes were blurry, my neck, shoulders, arms fingers (wearing compression gloves), back and legs were off the chart in pain. Half an hour lunch and two 15 minute breaks were just not going to cut it for me. I knew I wouldn’t know unless I tried, and I tried…

The next morning, I emailed my duty manager to explain that I am disabled and have many limitations and that I would like to work part time. She understood and emailed my team manager to look into this for me. My team manager asked what my conditions were and how the job is affecting me, she also asked what times would suit me. I told her 9-12 Mon-Fri as by lunch time my eyes are blurry and I’m fighting the fatigue with every fibre of my being. She went away to discuss this with the operations manager. She came back with very disappointing news, they offered me weekends 8-8 and another day in the week, but they rarely do that. That was my last day!

 It would have been easy to make the adjustments, sometimes disabled accommodations are very costly and difficult but they should still be made all the same. But this one would have been easy, I was already trained, and they already had a 12-8 shift that someone could’ve taken over from me, I was a good worker and they’ve lost that now.

Part of my training was to read a document called clinical information governance training, and in that document a page on diversity and inclusion.

The Equality Act 2010 provides specific protection from direct and indirect discrimination, harassment and victimisation for people who have these protected characteristics: • Age • Disability (including neurodiversity and conditions such as learning disability / autism) • Gender reassignment • Marriage and civil partnership • Pregnancy and maternity • Race • Religion or belief • Sex (previously referred to as gender) • Sexual orientation

I was told sorry hopefully you can find a job role suitable… that’s it! Basically f*** off.

What happened to making reasonable adjustments to make sure people with protected characteristics can participate in full? What happened to taking 5-10 minute breaks every hour, to avoid adverse effects? Have they read their own guidance?

This company is Serco, and you know what screw you!!

Lessons Learnt

I thought that regardless of the role you accepted, reasonable adjustments would be made under the Equality Act 2010. Clearly some companies are failing miserably. Their loss, because I would have been a great asset.

Muscle Memory

Since the end of May I have been struggling with my shoulder after I had a lymph node removed from my neck. I’ve mentioned it before so I’m not going to dwell on it too much, but the pain has been off the chart. The unfortunate thing is, the pain on and off has lasted so long that the muscles and tendons in my shoulder are so tight and stiff. If I hold my arm out to the side, I cannot lift it. My pain nurse referred me to physio and I’m back there next week.

All this got me thinking about past experiences, for the last 30 years of experiencing chronic pain, my body has been in a constant state of tenseness the physical condition of being stretched or strained. I have tried so many techniques involving relaxation over the years but have not been very successful, until now… After 14 surgeries I’m not surprised I have struggled with relaxation and I’m not hard on myself about it. Here are a couple of examples; when I used to drive I would catch myself in a tense position and then relax. 10 seconds later, I’m back in that same tense position without even realising its happening over and over again. When laying down relaxing watching TV, I would catch myself in a tense position, even though I feel comfortable. I would, and still have to consciously scan my body and make sure I’m ACTUALLY relaxed.

After browsing the web to learn more about this, I came across an amazing analogy for this.

http://www.heafnerhealth.com/blog/muscle-memory-what-is-it-and-how-does-it-change-after-an-injury

Over the last couple of months, I have been religiously listening to positive affirmations for healing before I drift off to sleep and it’s been wonderful. I have also just started a meditation course online, courtesy of the wonderful Charlotte, Reiki master and meditation teacher. You can find her on socials: www.livingjivawell.com, https://linktr.ee/livingjivawell .

It’s been 14 months since I started my medicinal cannabis journey, and having my pain levels dampen down has allowed me to focus more clearly on what I need to do to be at peace with my body. I still have fibro flares, I still have terrible ME crashes and I still tense up, but I will never give up advocating for medicinal cannabis to be available on the NHS. My son has Fibromyalgia; he is my driving force.

Lessons Learnt

Thank you to the Sapphire Medical Clinic. I dreamt that one day I would get to try medicinal cannabis and here we are. www.sapphireclinics.com

Scarring and associated complications

I have never given a second thought to scars after having surgery, because after 14 surgeries I have only experienced one incident where a wound became infected and antibiotics cleared that up. That is up until now or should I say my recent surgery in May. Most of my surgery scars you would struggle to find them, my skin heals really well. Many people have no idea when they see me that I have a scar right across my throat/neck after having a disc replacement, it has healed really well.

Types of scars (NHS, 2021)

A scar can be a fine line or a pitted hole on the skin, or an abnormal overgrowth of tissue.

Normal fine-line scars

A minor wound like a cut will usually heal to leave a raised line, which will gradually fade and flatten over time.

This process can take up to 2 years. The scar will not disappear completely and you’ll be left with a visible mark or line.

Fine-line scars are common following a wound or after surgery. They are not usually painful, but they may be itchy for a few months.

Keloid scars

A keloid scar is an overgrowth of tissue that happens when too much collagen is produced at the site of a wound.

The scar keeps growing, even after the wound has healed.

Keloid scars are raised above the skin and can be pink, red, the same colour or darker than surrounding skin. They’re often itchy or painful, and can restrict movement if they’re tight and near a joint.

Hypertrophic scars

Like keloid scars, hypertrophic scars are the result of excess collagen being produced at the site of a wound.

Unlike keloid scars, hypertrophic scars do not extend beyond the boundary of the original wound. They may continue to thicken for up to 6 months before gradually improving over a few years.

https://www.nhs.uk/conditions/scars/

For the first 2 weeks all was well but then I could feel something sharp at one end of the scar after the dressings came off. An internal stitch had started to make its way out of the wound (didn’t know at the time, thought it was a scab). Not only was it painful but it would catch on clothing, I was told to leave it alone as it would eventually make its way out, but I had to snip it down slightly.

It then became so painful and swollen I took a trip to see an emergency doctor, the scar tissue underneath the wound was about an inch either side. She told me not to worry it all looks normal and to take pain killers, obviously…! I asked her why a stitch was making its way out as this had never happened to me before. She explained…

Healthline (2021)

Dissolvable stitches are treated by the body as foreign objects that don’t belong. The immune system generates an inflammatory response to dissolve, or eradicate, the perceived invasion.

The Austin MOHS Surgery Centre (2021)

What Is a Spitting Suture?

In some cases, an absorbable suture can be “spit out” if the body doesn’t break it down. This happens when the stitch is gradually pushed out of the skin because the body is rejecting the material. Spitting sutures can feel like a sharp spot on the incision, and a small white thread may start emerging. Other times, a spitting suture can simply look a pimple or red bump near the wound. https://www.austinmohssurgery.com/about-mohs-surgery/is-it-normal-to-have-spitting-sutures-after-mohs-surgery/

At my follow up I was told my scar has become hypertrophic and because my body doesn’t respond in the same way as most to pain, it feels much worse and I should have healed better at the time of my follow up which was at the 4-week mark. She was so apologetic that my recovery wasn’t going as well as she had hoped, then booked to see me again.

During the time of recovery, I have been massaging the wound day and night to help break down the scar tissue, and it’s really helped. But…It was clear after discussing with medical professionals including my pain team, that the scar tissue has interrupted the nerves in that area. If anyone has experienced Sciatica and endured that pain, will understand when I say that’s what my neck and shoulder feel like. I’m so disappointed… My hairline and scar area are still completely numb, I am back to not being able to lift my right arm up at its worst and at its best it aches like hell. All I can do is pop extremely strong pain killers. Without my sling on you would never know… by the way I am using castor oil, hemp crème and bio-oil daily.

Lessons learnt

I took for granted my previous experiences, never again. I’m always so shocked how something can feel numb yet painful at the same time…

Healing process 12 weeks

Numb hairline

Where the raised end is that’s where the stitch made its way out