Always interesting, often different

Archive for the ‘Medical’ Category

A new solution for dry eyes

Thealoz Duo Gel eye solutionIt’s over 5 years since my last corneal transplant, because of keratoconus. Since then, the only major concerns my consultant has had is that my eyes are too dry, which can cause problems with graft viability. The more corneal transplants a person has, the less likely they are to be successful. I’m now on my second pair of transplanted corneas, so I want these to last me for the rest of my life. 

I’ve used HyloCare drops for many years, but my eyes are still too dry. On my latest trip to Moorfields to see my surgeon, Mr Romesh Angunawela his research fellow suggested that I try a new product called Thealoz Duo Gel. It’s preservative free, an essential for me, because of my allergies. The single-dose vials are fairly easy to use. The gel is quite viscous, so for anyone such as myself with arthritic hands, you need to squeeze quite hard to get all the gel out of the vial. 

The gel can be used at nighttime to keep eyes moist. I’ve been using it when I put in my corneal lenses, because my eyes are usually drier during the day. I squeeze the gel into my scleral lenses and then top up with HyloCare. This is certainly making it much more comfortable to wear my lenses for longer periods. I don’t need to add extra HyloCare during the day to keep my eyes moist and comfortable, which is a real bonus.

Beware, if you by these yourself there are two different products. Don’t get caught out like I did. In the gap between using up the prescription I got from Moorfields and getting them added to my monthly prescription, I bought some vials to have as a standby. I went on to Amazon and placed my order. The first time I used them, I could see they were not as viscous as the ones I had from Moorfields. On checking more carefully I realised I had bought Thealoz Duo Drops – NOT Thealoz Duo Gel. 

The drops are very similar to HyloCare, but as I need the Thealoz Duo Gel and have a good supply of HyloCare, I passed them onto my carer, who also has dry eyes. 

I’m pleased to have found this new product and am hoping when I go back to Moorfields for my next contact lens check-up, the specialists will detect that my eyes are now moist. When I take my lenses out at night, there is still fluid and gel on them. That looks like a good sign to me.

Tick Bite Prevention Week

The red bulls-eye rash from a tick biteThis week is Tick Bite Awareness/Prevention week. According to Public Health England, 3,000 people contract Lyme disease each year, after being bitten by a tick. Early treatment is vital and can help to prevent secondary complications. Having a bull’s eye rash on the skin is a clear indicator for having been bitten by a tick. This happened to my good friend Dave, here is his story. 

Dave contracted Lyme Disease 30 years ago, when he was in his 20s. The cause, a bite from a tick when he visited the New Forest. Dave quickly became unwell with a high fever. At first he thought he had caught flu, but his temperature continued to rise and his partner took him to A&E. Fortunately a consultant there had a knowledge of tropical and overseas tick-borne diseases. He recognised Dave’s bullseye rash and temperature of 43°C with severe flu-like symptoms, as a tick bite. Dave was given several very strong antibiotics and 2 weeks later he left hospital. Little was known about Lyme disease in the UK back then. 

About 6 months later, Dave suffered from what he was told at the time was post-viral fatigue syndrome. He has to suspend work on his degree as he could only concentrate for 4-6 hours a day. He couldn’t play badminton or squash any longer and got tired after walking short distances. The symptoms were like ME. Dave recovered enough to return to his studies, but his energy levels never returned to normal. Now this would be recognised as Chronic Lyme Disease or Post-treatment Lyme Disease Syndrome (PTLDS). 

A year on, Dave developed psoriasis an auto-immune condition, which attacks the skin, causing skin cells to replicate every 2 to 3 days instead of every 28. His body was covered in very painful sores. Dave was admitted to hospital again for intensive treatment. This included coal tar, topical steroids, dithranol and UV light therapy. During this time Dave’s knees became very painful, and he was diagnosed with Psoriatic Arthritis. Over the next 10 years, Dave had 10 more hospital admissions for psoriasis treatment.

In 2001 Dave was diagnosed with type 1 diabetes, yet another immune system condition. He began to wonder if all these conditions were related. By this time Dave’s psoriasis was being treated by medication, but the treatments had very unpleasant side effects and one had. also caused liver damage. Two years on Dave fell down the stairs, dislocating his ankle and breaking his tibia and fibula. This required four operations and 16 weeks in plaster to repair. 

The trauma of this caused Dave’s first psoriatic arthritis flare. Almost all of his joints were affected. His condition was quickly diagnosed and Dave was fortunate in being able to have a new treatment, an anti-TNF Biologic drug called Etanercept. This was very successful, Dave’s psoriasis went into remission and his arthritis had stopped progressing. However, because of the amount of time he was having off work, Dave was forced to take early retirement. 

Sadly the Etanercept, stopped working after 6 months and Dave was moved onto Humira, which only worked for about 9 months. In May 2009 Dave developed Exfoliating Erythrodermic Psoriasis together with massive internal infections because of his severely compromised immune system. He needed 2 major surgeries to remove infected internal tissue and was in hospital for 7 weeks. 

Dave then needed 6 months off his Anti-TNF Biologic drugs, to allow his body to recover. Those 6 months were hell due to pain and the psoriasis. Dave begged his consultant to put him on a new treatment. He has now been on Infliximab for over 10 years and this continues to work well for him. Dave got diagnosed with fibromyalgia and sleep apnea more recently. He was careful to start shielding several weeks before the first lockdown, and he’s looking forward to being able to leave his home again soon. 

Dave’s story is, sadly, not unusual, tick bites can have devastating consequences. We now know much more about the dangers of tick bites and about Lyme disease, though there is still no cure. Dave’s advice to anyone going to the countryside is:

    • Be sure to wear long trousers
    • Tuck your trousers into your socks
    • Carry out a full body check once home or back at your accommodation
    • Carry tweezers or a tick removal tool if you go walking anywhere where domestic livestock or wild animals are present – you can buy one here 

Scooter v Wheelchair – which to chose

342D81D3-0B22-443F-96E1-822AC749AE52It was International Wheelchair Day on 1st March, so I wanted to write something appropriate. 

One of the early decisions many disabled people face when they find walking too painful or difficult is whether to buy a scooter or a wheelchair. This blog post is not going to be about which make or model to buy. But will help you think about which of the two options is best for you.

Over 12 years ago I started off with a small scooter.  I was able with help, to take it apart and put it in the boot of my car. It also had a removable battery that I could take inside my flat to charge. It was very useful when I was going off to museums and galleries, places where the floor was even. But it was very uncomfortable on rough ground and definitely didn’t like steep inclines. 

But it was the reactions of other people that shocked me.  I was told on many occasions that I was too young to need a scooter!  This usually happened when I asked people to move so I could get past them. Other comments that hurt even more were; “You can’t really be disabled, otherwise you would have a wheelchair”. And “You just choose to use a scooter cos you’re too lazy to walk”. 

My scooter really helped to give my a greater level of independence. But as my spinal arthritis began to deteriorate, I found the seating on the scooter was getting too uncomfortable. I decided to ask for a referral for an NHS wheelchair. I was delighted to be told that I was eligible for one of medical grounds. However, because the property I was living in was not wheelchair accessible I was ineligible on accommodation grounds as they only supplied wheelchairs for indoor use! 

Sadly this rejection is all to common. Often when people are referred to Wheelchair Services – WCS they are not getting a suitable chair. For those people who can-self propel, it’s obviously easier to push in a lightweight chair. In the wheelchair groups I belong to on Facebook there are frequent posts from people who’ve only been offered a heavy chair, not the lighter one they need. Often they are told; “Your partner can push you.” That can increase a dependency that is often already fraught. Some WCS are now just giving people a voucher, which doesn’t cover the cost of the right wheelchair. So many of us are forced to apply to charities or set up a Go Fund Me. 

It’s disgraceful that so many disabled people cannot get the right wheelchair. Surely it should be a basic right for our independence? 

WCS are another part of the NHS which is now privatised. Hence the lack of funds and inappropriate equipment being offered. 

I was fortunate to be able to apply to a nursing charity for funds to buy my first electric wheelchair. The difference it made to my ability to get out and about was wonderful. I was able to go out for longer periods. The chair is much more compact and easier to manoeuvre in small spaces. I also have a deep memory foam cushion, which means I can sit for longer periods without pain.

But the greatest change for me was the attitude of other people. Once I began using my chair nobody ever queried my disability. Nor did anyone make inappropriate remarks about my need to use it. It even helped me to get a higher rate of DLA (this was the benefit before PIP). I had been on the lower rate for mobility for some years but my mobility has worsened. My first application for review was turned down. I appealed and went in front of a tribunal. I used my scooter at the interview and was promptly refused again. When I managed to speak about this with other disabled people I was told I should have borrowed a wheelchair and taken a carer with me! I wish I’d known that previously.

On my next DLA review I wrote about my wheelchair use and provided confirmation. I was awarded both components of DLA at the higher rate on a indefinite basis. I was so relieved. 

So for me a wheelchair is the best choice. I have friends who prefer to use one of the larger scooters and pay for it from their PIP. Whilst these scooters are very comfortable, they are very bulky. Having to leave them outside a shop increases the chance of them getting stolen too, especially in London. 

My one caution if you opt for a scooter – never buy a three wheeler. Why? They are inherently more unstable, and I have seen some appalling injuries when people have been tipped off them. There are lots of four wheeled scooters and even a five wheeled one available.

I hope whatever you choose brings you lots of freedom.

Towards the end of lockdown?

FEC9738E-C6D1-4076-9488-52DFE7397102We are on the edge of a precipice. Yet this government wants to push us over the edge. According to Public Health England, over 110,000 people have died from COVID-19, 800 in the last week. There is a 7-day average of 10,000 new cases, and 21,000 people are receiving treatment for covid in the NHS.

The review of the lockdown and the consideration of reducing restrictions is already being touted by ministers. Boris Johnson seems determined to send pupils back to school at the beginning of next month and neither pupils nor most teachers will have been vaccinated. Surely that’s a high-risk strategy? Opening the pubs again in April can only lead to a further increase in covid cases. 

Yes, 15 million people have had their first vaccination, most of whom won’t get their second jab within the 2-3 week clinical guidance. They will have to wait 12 weeks for greater freedom. What sort of freedom? We don’t know as yet. We don’t know the vaccine efficacy with such long gaps. Even after my second jab, I’m going to be very cautious about where I go and who I meet. 

For many disabled people, lockdown is an extension of our everyday lives. We’ve only had more involvement in our communities because everyone else has discovered Zoom. We’re old hands at using it and have been eagerly showing others the way. 

Will we go back to crowded meetings in inaccessible halls? Will we suddenly find that unless we go somewhere in person, we cannot access culture or community events? 

We have been cocooned, safe in our homes. I’ve not missed busy, noisy shops. I’ve not missed overcrowded public transport. How will we be protected from those who refuse to be vaccinated? Will people still wear masks and observe social distancing? 

The scientists say that the lockdown needs to continue, but will the government follow the science? They’ve not done so until now. What would make them actually do the right thing for public health? 

Leaving home feels scary with such high levels of infection. If there were only 1,000 daily infections, or 50 deaths, or just 500 people in hospital, that would feel a great deal safer. 

The Zero Covid campaign seeks to persuade government to stop the cycle of repeated lockdowns and only lift restrictions when the number of new cases is close to zero. New Zealand, Taiwan, South Korea, Vietnam and China have all used this strategy.

If the U.K. had continued with the lockdown in June 2020 (when there were still 31,600 new cases of covid per week) and followed a zero covid strategy, we would not be in lockdown now and tens of thousands of people would still be alive. The Tories reckless strategy of focusing on businesses and profit, rather than people and safety, has blighted the lives of almost every family in the country.

The Independent Sage committee of scientists and the Hazards Campaign for workplace safety have both been advocating for a UK zero covid strategy. 

Figures quoted at the end of last year show that only 11% of people who were told to isolate by the NHS Track and Trace did so. This clearly shows why covid is continuing to spread. There must a financial incentive for everyone who is told to self-isolate. 

Extra economic support for those who are on low incomes and cannot afford to self-isolate is vital. There must be practical help for people living in overcrowded homes to self-isolate, such as hotel accommodation. The government should compensate everyone who has lost income because of the pandemic. 

All ports of entry to the UK must operate covid screening, and where necessary effective quarantine with further testing. The current chaos at airports must end, with passengers from high-risk countries separated out before passport control. 

As a nurse, used to ensuring staff follow infection control policies and procedures, to protect those we care for, all of this is common sense. I’m frustrated and angry that this government can’t understand the basics of how and why viruses spread. 

Yes, I know the economy is important, but so are people’s lives and their safety. Too many of my friends have already died. There will be too many memorial services to attend. 

The NHS waiting lists for surgery and MH services are longer than ever. Surgeries can be moved into the private sector. But that will not work for those people who need experienced psych support. Yes, there will be private services the NHS could access, but they will be quickly over burdened. They are also used to a very different clientele, with very different concerns. 

If you want to know more about the campaign, go to the Zero Covid website.

Post-op surgery care


Throwback Thursday 1

As was organising my writing files, I came across several other articles that were also unpublished – so I’m going to update and post them over the next few Thursdays. 

I was born with a fairly unusual eye condition called keratoconus. It affects about 1 in 5,000 people and causes the cornea to become misshapen. Some people with the condition eventually need a corneal transplant.

I have now had a second transplant in each eye. The first two surgeries were over 25 years ago. My last two transplants were carried out in 2016 and 2017. Most my outpatient care has been at Moorfields Eye Hospital in London. My surgeries took place at St George’s Tooting. My surgical care was fantastic. The nursing care, sadly, was not as good as it should have been. I’ve blogged about this previously.

When corneal transplant surgery takes place, minuscule stitches are used to anchor the graft in place. Over time, as the eye heals, some of these stitches come loose and start to feel very uncomfortable. The sensation is like having an eyelash in your eye. The eye can become sore and painful too. I wear scleral lenses, and over the last few weeks I’ve been very aware of discomfort in my left eye once I’ve taken out my lens. 

On my last appointment at Moorfields, my consultant was away. So I saw his registrar. We decided that because I only had some slight discomfort in my left eye, he would leave the stitches until my next follow up appointment. So I was fairly certain that last week’s visit would include stitch removal. 

Mr Romesh Agranawalah is a highly skilled surgeon who specialises in working with patients who have complex corneal conditions. I am extremely fortunate to be under his care. I present a challenge to eye surgeons, not just because my corneas are badly affected by keratoconus, but because I’m also allergic to local anaesthetic. I’ve previously had stitches removed under general anaesthetic. Removing stitches without anaesthetic is unusual and rarely done. Also, it is sometimes difficult for me to position my head appropriately without being in a great deal of pain. Romesh, we’ve got to know each other well over the past few years, is patient and understanding of my needs. Manoeuvring my wheelchair in the tiny clinic spaces isn’t easy either!

So getting organised and settled prior to being examined is quite a performance. But, as ever, Romesh is unruffled and still finds time to ask about my other health issues. Having examined me, the decision is obvious, two stitches need removing, and a third trimmed. I’m fine with having the procedure. I have trusted this surgeon to repair my vision; he has done this and more. My vision has actually improved from my baseline pre-surgery levels. 

Once Romesh returns with the equipment needed, he makes sure I’m in as comfortable position as possible, and begins his delicate task. Despite having no local anaesthetic, I hardly feel anything as each stitch is cut and then gently removed. I get a break whilst Romesh gets some new scissors. Now, for the last task. It’s slightly disconcerting to see the scissors reflected in the mirror of the slit-lamp, but all I feel is a light brushing sensation. He trims the ends of the stitch. The tricky procedure is over. As always, I thank Romesh. He has literally changed my life by giving me my vision back. I can drive and therefore have freedom.

I can now put my scleral lenses back in and drive to Synagogue in time for the Friday night service. I am grateful, not only for the skill of my surgeon, but for the NHS. We must never forget how important it is that the NHS remains a public service, free at the point of need.

Surgeons like Romesh Agranawalah are the people who make our NHS the envy of other countries. Each day when I put in my lenses, my vision goes from blurred to crystal clear. Almost six years after my last surgery, I’m still amazed at how much I can see. I will fight for the NHS as long as I have breath in my body.


In April 2020, during the first UK lockdown, I felt that familiar pricking sensation in my eye, which meant I had another loose stitch. Having had a check-up phone call from the Contact Lens Clinic, they arranged for me to go into A&E at Moorfields and get the stitch taken out. We agreed a date and time so the surgeon on call was aware I was coming in. 

The streets were deserted and remarkably, we had a choice of where to park. My carer drove me, just in case I couldn’t put my scleral lens back in for some reason. We waited outside for about 10 minutes as they were limiting the number of patients in the A&E department, as part of their Covid precautions.

Once inside, I was called to see the consultant within 20 minutes. That was a record! Moorfields is usually so busy that on clinic days. I’m usually there for at least 2 hours and I’ve waited even longer to be seen at A&E. 

I met the consultant, he inspected both my eyes and told me there were two stitches needing removal. He was a little taken aback about my local anaesthetic allergy, but I assured him I was fine without anaesthetic. 15 minutes later everything was done, and we chatted for a few minutes more whilst the nurse went to pharmacy to collect my antibiotic eyedrops. I was on the way to the car within an hour of my arrival. 

As always, I’m so grateful for all the expertise of the consultants who do such amazing work.

COVID-19 Vaccination Day

Picture of a Covid vaccine vialI’ve longed for this day, but now it’s here, I’m exhausted and worried. 

Exhausted because it’s been months since I’ve left home and I’ve forgotten how difficult it can be to dress and get ready to go out. My partner had a Zoom meeting so couldn’t help me. It took 30 mins to get into my jeans – at least I hadn’t put on any weight – put socks and boots on and make sure I had everything I needed in my bag. Even though my coat was out of the wardrobe and ready for me to put on, I still struggled with getting it on. I had put my bag on the end of the bed and didn’t realise how near the edge it was. It fell to the floor, and I had to grab it from there. More exhaustion and pain. 

Navigating my chair through the front door and up the ramp to my car, I already felt tired. Would all this effort be worth it? Would I get my jab? The nurse I spoke with when I booked my appointment asked me about drug allergies. I have several, including one which resulted in a cardiac arrest, so she warned me that the PfizerBiontech jab may not be safe for me. I would need a doctor to assess me at the vaccination hub. 

It felt strange driving across London, with almost empty streets. Looking at the people, it was shocking how few were wearing masks. There was a huddle of a dozen young people outside a donut shop. No social distancing and only one person wearing a mask. No wonder the virus rates in London are so high. 

Arriving at the hospital, we got a parking space on only our second circuit of the small carpark. I got my chair out of the boot and we looked for signs to the hub. It was so long since I’d been at the hospital, I’d forgotten where the route to where we needed to be. Help from a staff member quickly set us off in the right direction. It was good that everyone inside was wearing masks. The corridors had barriers telling people to keep to the left-hand side, to ensure social distancing. Everywhere was unusually quiet. There were no wards on this level, only admin offices and outpatient departments. 

Going into the hub, the noise felt overwhelming. The babble of conversation and names being shouted out was disturbing at first. Everyone I could see was wearing masks. I’d not been in such a crowded space for over a year and have previously avoided busy, crowded places. Social distancing was down to one metre rather than two in the waiting area. The reception desk clerk was a solider, surprising as we were miles from the nearest barracks. 

Booking in was swift and easy. I was told that the hub was running 30 minutes late, so settled down to catch up on reading my emails. It reassured me to read a US research study that the PfizerBiontech had a very low rate of adverse reactions. 

Meanwhile, my carer was trying to book for his jab. His GP surgery had not given him an appointment. As a frontline care worker, he should have had his jab some weeks back. Eventually he got everything sorted, and it was then time for me to go through to see if I would get my jab. The medical area seemed crowded with little social distancing, except between the desks and between the injection pods. Staff were standing very near each other, as it was the only way they could communicate. 

I went through my medical history with a nurse, confirming my allergies and that I wasn’t allergic, as far as I knew, to any of the components of the vaccine. She appeared disbelieving that giving me lignocaine could cause a cardiac arrest, and she hurriedly went over to a doctor to check if I could still have the jab. Yes, came back the reply, I could, but would need to have my epipen available and stay to be checked for 30 minutes after getting the jab, rather than the usual 15 minutes. So relieved.

I quickly rummaged in my bag to find the epipen. Only to discover it wasn’t there. No idea why, as I always had it with me when going out. So many cafes and restaurants don’t label food or know ingredients properly. My nut allergy means I never risk being without at least one epipen nearby. I knew there was one in my car and signaled to my carer to ask him to collect it for me. I found it shocking that I needed to have my epipen with me. Presumably this meant that there was no adrenaline available in the hub. It’s in the middle of a large teaching hospital, A&E wasn’t nearby. Surely there should be some provision for emergencies?

Paperwork completed, I wheeled over to the pod, and the staff there moved everything around so I got some privacy. The person checking my paperwork queried if I was ok to have the injection. She misread my allergy information, thinking it related to one of the vaccine components. I reassured her and rolled up my left sleeve, ready for the injection. I couldn’t get my sleeve high enough on my arm so a medical student – the only person I saw with a name tag – moved it it to the right place. The nurse quickly gave me the jab. I got my sticker and my vaccine card, then was directed to the waiting area, having been told that someone would keep checking on me until I was ok to go home. I declined a drink and biscuit as there were no tables and my grip isn’t strong enough to manage both without dropping one. 

I pulled my phone back out of my bag and started reading again. 10 minutes later, no one had checked on me. There was a care assistant or cleaner who was doing the teas and wiping down chairs, but no other staff came to see me. 15 minutes later, still no nurse, 20 minutes later, the same. Luckily, I was feeling absolutely fine. I waited another 10 minutes and then asked the care assistant if it was ok for me to go before a nurse saw me. She told me I could go whenever I was ready, so I wheeled out to join my carer and go home. 

The journey home was quick and easy. I was feeling ok, but really exhausted and so pleased to have help to get undressed once I was back in my own space. 

As the evening continued, I still didn’t have any side effects from the jab, no headache, no sore arm, no fever or feeling unwell. I felt very relieved and so pleased that I will soon have some protection from this ghastly virus. I’m still concerned about this 12 week delay when the manufacturer recommends 3 weeks, but there is nothing I can do to change that time lag. 

In the meantime, having the jab means I can have clients visit me at home, which will really help those people who struggle with using the phone or Zoom. I’m not even thinking about going out. Even when lockdown ends, I’m still going to be very cautious about leaving home again.

Do we really need more sleep in winter?

With the shorter days and longer nights it appears we could go into hibernation. That’s not always a good idea.

Melatonin produced by the pituitary gland regulates the body’s sleep and wake cycle. Lack of light causes it to produce more melatonin making us feel tired and sluggish.
Also, the lack of light during the winter months can cause seasonal affective disorder – SAD. If you think your depression increases during the winter months, it might be worth speaking to your GP. You could also consider investing in a Full Spectrum White Light panel. You only need to use it for a short time in the morning for it to be effective.
Medical advice is that the best ambient temperature for sleeping is 18°. I know that that is far too low for me and I’m sure that applies to others to. One of the joys of having a heating system controlled via an app is that I can boost the heating for one hour when I’m going to sleep. 
I set the normal daytime temperature at 22° I increase that by just 1° for an hour and that makes a big difference for me. There is no way I can go to sleep if I am too cold. That is not just about having winter weight pyjamas or making sure I have enough covers on my bed. It’s also about the temperature of the room.
certainly don’t enjoy the longer nights and shorter days, I’m much more reluctant to go out on dark evenings than on nice summer ones.
Whilst I’m fairly certain I don’t have SAD I know that I always want to sleep longer in the winter. 
When the air is too cold that also negatively affects melatonin production, causing it to disrupt our sleep cycles. However, if the air is too dry or too warm, that can dry out the body’s mucus membranes make us more susceptible to colds and flu.
The other reason that our sleep patterns may alter is that our diet differs in the winter from the summer. Christmas and New Year means lots of sugary, fat laden and high calorie foods. These foods impact the body, causing a hormone called leptin to increase. This can also disrupt sleep cycles. 
What happens then is that we can crave those leptin increasing food, sometimes not knowing when we are full. If we continue to eat like this, it effects sleep and we continue the vicious circle.
So how long should we be sleeping? 
I know I can easily sleep for 10 hours at night and when I was really ill sometime back, I often slept for 12 hours. Now I try to aim for eight hours because any less that and I really feel sleep deprived. I know many people who can survive on much less but most dont have disabilities!
Research has suggested that people who are sleep deprived gain weight. Because of the impact sleep has on glucose levels and regulating sugar, several studies have found that not having enough sleep could be a precursor to diabetes. There are also studies which show that not getting enough sleep can reduce life expectancy.
Good sleep habits to adopt:
1. Try to stick to a routine
2. Make sure your room is the right temperature for you
3. Try to turn off tablets and phones an hour before bedtime 
4. Do something different to relax before sleeping 
5. Get some natural daylight exposure every day or use a           SAD light panel 
6. Try not to eat for 3 to 4 hours before bedtime

Sleep well everyone. 


Why words matter – Spoonie or Energy Impaired

Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.

The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.

We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals. 

The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.

Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology. 

Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted. 

We’re not “just tired” as people seem to think, it’s more fundamental than that.  It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.

For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go. 

That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.  

How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live. 

We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition. 

Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day. 

If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.

That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them. 

We talk about people having a visual or hearing impairment so why not talk about being energy impaired?

I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.  

If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.

How I found Copaiba

Having decided that I would explore the benefits of using essential oils, the first one I tried was a blend called Balance. It is an amazing mix of Spruce, Ho Wood, Blue Tansy, Frankincense and Blue Chamomile. For me it helps when I’m anxious or feel overwhelmed either by things that are going on in my life or what I need to do. I also use it when I’m going into stressful situations, such as meetings I know could be difficult. It helps to make me feel more grounded and keep things in perspective.

From buying Balance, I joined a Facebook group which is run by Rachel, the person who introduced me to dōTERRA. The group is a lovely safe place to chat on line with others who are also learning and Rachel posts some brilliant hints and tips. 

One of the articles Rachel posted was about the pain relieving and anti-inflammatory effects of Copaiba. I began to wonder if it might help me as some people have found it helps to reduce the effects of neuropathy. I have quite bad neuropathy in both my feet as a result of trapped nerves in my spine. 

I researched Copaiba online and discovered that it is derived from the resin of the copaiba tree which can grow upwards of more than 100 feet and can be found in tropical South America. Copaiba oil is widely used in cosmetic products including soaps, creams, lotions, and perfumes. Since the 16th century, copaiba essential oil has been utilized in traditional health practices by the natives of north and northeastern Brazil. Copaiba can help soothe anxious feelings and it can be applied to the skin to promote a clear, smooth complexion. Taken internally, Copaiba essential oil supports the health of the cardiovascular, immune, digestive, nervous, and respiratory systems. Although Copaiba does not contain psychoactive cannabinoids, the main component caryophyllene may be neuroprotective and have cardiovascular and immune benefits. It’s also a powerful antioxidant that promotes immune health.

All of which sounded good to me! But there was one problem, at the time dōTERRA only sold Copaiba in the US (it is now avaiable in the UK) and I didn’t have the contacts to buy any from there. I did discover another supplier who would ship direct from India, so I bought some and blended it with Frankincense, Oregano, and FCO (fractionated coconut oil). Having put the blend into a rollerball bottle I applied it onto the soles of my feet just before going to bed. I was amazed that during the night that I only woke once instead of several times and that the discomfort in my feet reduced considerably.

I can also get severe pain in my back, usually caused by muscular spasms. Usually I would take Valium to reduce the spasms, but I decided that next time I had a bad pain attack I would get my partner to put some directly onto my spine. 

Essential oils work quickly, in 22 seconds the aroma reaches the brain, in 2 minutes they reach the blood stream and by 20 minutes they affect every cell in your body. 

I was amazed that within 10 minutes the spasms in my back had reduced and by 20 mins they had gone completely. With conventional medication that would normally take at least 30 mins and often and hour and then it would often return again 1-2 hours later. Each time I used the Copaiba blend the spasms didn’t return.

The more reading I did the more I was concerned that the Copaiba I had bought really wasn’t pure enough. The oil smelt good, but it was very cloudy, and therapeutic grade oil should be clear and pure. Also it came with no certification or indication of what tests were done to ensure safety and purity. I needed to buy the genuine oil.

I was fortunate that I found a group on line where people swap dōTERRA oils or sell on their overstock. I found two sellers who were willing to ship to the UK and I was soon the proud owner of 4 bottles of Copaiba.

I now have the purest form of Copaiba, a certified therapeutic grade oil. I could begin to try to find out if ingesting the oil would enable me to reduce my use of Tramadol. Oils can be ingested by either drinking in water – 1-2 drops is all you need, or by making up your own capsules. I decided to try the capsules because they would be the easiest to carry around with me. 

Empty gelatine capsules are easy to buy and I also got some capsule holders so that it was easy to fill them. With help from my partner I filled about 30 capsules. I used 2 drops of Copaiba and topped up,with 3-4 drops of FCO. I learned quickly that you need to make sure the capsule top clicks tight! 

I then began to replace my lunch time dose of Tramadol with one capsule, that worked well and after a few days I replaced my evening dose with a Copaiba capsule. I have only had one pain spike in the last 4 weeks when I have needed Tramadol and that was after a fall. 

So I am now taking 50% less Tramadol than previously. I doubt that my pain levels will allow me to completely come off Tramadol. But to have reduced my dose so much is wonderful. Essential Oils have made a massive and positive change in my life. 

Finding a different way of pain control

CannabisPlant.pngA combination of long term medication is something that many disabled people use to control the pain we deal with each day.

From time to time various scare stories appear in the press and sometimes we find ourselves have conversations or even arguments with a GP who seems determined to stop prescribing medication that works well.

Everyone is different and each of has to find the best way for ourselves.

For several months I decided to use a cannabis spray to try and reduce the amount of Tramadol I was taking. On a bad day I was taking the maximum dose of 2 x 50 mg four times a day. The cannabis spray definitely helped and I began to drop down to 2 x 50mg 2 or 3 times a day.  But the taste was pretty vile and I wanted to look at other options.

I’m part of a Facebook group for wheelchair users, which aims to share hints, tips and ideas for making life a little easier.  One day there was a post about using essential oils for health benefits and I decided to explore. 

What I found out absolutely amazed me. I have used homeopathy and alternative medicine for many years and found it to be very beneficial for things like headaches, cuts and bruises as well as healing after surgery. But using essential oils is another world all together. 

The first thing I found was that there are a myriad of companies out there selling oils. Some are organic, others say little about their origins and their bottles don’t say where the oil comes from. 

I spent ages researching as much information as I could find and learnt a great deal about how oils worked both physically and emotionally. There is a good amount of research and some really interesting studies. What struck me was the way that both Doctors and Nurses were involved in these studies and use oils in their practice. 

There are three main international companies who sell oils. One is based totally in the US with no  UK distribution system, so that ruled them out for me. Another company is mainly in the US, with some distributors in the UK. They grow most of the plants and trees in farms they own in the US, with few from other parts of the world. 

The third company is the newest and is called dōTERRA, meaning gift of the earth. They became my choice for four reasons:


doTERRA’s process of sourcing is intended to provide powerful essential oils as well as create an industry that uplifts and instills hope in farming communities around the world. This process is called Co-Impact Sourcing

doTERRA Co-Impact Sourcing helps local artisans in countries such as Haiti, Somalia and Indonesia. They can provide for their families, obtain sustainable jobs, and have hope in their futures.


The more pure the essential oil, the more powerful the results. Many essential oils available to purchase are not pure. Often, they contain fillers or other elements that dilute and alter the purity, thus diminishing the healthful qualities of the oil. In order to guarantee that the oils you use are pure, doTERRA and a team of highly skilled professionals formulated a successful testing procedure that qualifies doTERRA oils as uniquely pure and free of contaminants. This quality protocol is called CPTG Certified Pure Therapeutic Grade.®


The doTERRA Healing Hands Foundation™ partners with Operation Underground Railroad (OUR Rescue) to bring healing and hope to the world. OUR Rescue exists to rescue children from sex trafficking by utilizing some of the world’s experts in extraction operations and anti-child trafficking efforts. 

The children rescued from these extraction efforts are then rehabilitated by OUR Rescue’s aftercare program, and the perpetrators are arrested, tried, and convicted to ensure that they don’t traffic children again. 


dōTERRA has amazing Wellness Advocates who will help you to explore the oils and find which ones are best for you and your family. There is no sales pressure. 

You can become a wholesale customer, get 25% off all your purchases and then get points to enable you to get oils for free. You don’t need to sell to anyone. For those who want to make money, there is lots of support to help you build a business. 

My next blog post will talk about the oil I found that has enabled me to cut my Tramadol use by 50%.

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