Monday Magic- Inspiring Blogs for You

On Apr 17, 2017 By Claire Saul (PainPalsBlog)In Blogging, chronic illness9 Comments

Hello! I hope that everyone is enjoying a fantastic Easter long weekend. I am still finding new blogs to share with you from the Chronic Illness Bloggers group and this week we have a mixture from art to crafts to our loved ones. So go make yourself a cuppa, pull up a seat and enjoy getting to know some more fantastic inspiring people,

Claire x

Monday Magic

bouquet-677939_960_720 — Beautiful picture from Ness’s post on The Girl with the Five Lads and Fibro

Can creativity be a realistic distraction in the face of chronic illness? “The Agony & The Ecstasy”

On Apr 16, 2017Apr 16, 2017 By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Invisible illness, Pain relief1 Comment

I have another link for you this week which examines how distraction, particularly through the arts, can help to manage symptoms of chronic illness. This could of course be construed as a sweeping statement and I am certainly not saying that every chronic illness can be tamed by use of artistic means. I am certain that those of us with chronic illnesses will readily say that our own conditions vary from day to day, some from hour to hour, and that relief and the methods to get that relief are variable. In other words, conditions are individual and we certainly are.

I have written about British actress Cherylee Houston before. She is in a long running British soap opera, is a chronic pain sufferer, wheelchair user and is the ambassador for Ehlers Danlos Support UK. In this BBC Radio 4 programme she sets out to meet other chronic pain sufferers and to learn how the condition impacts upon their lives, their work and how they use creativity to help themselves. Is pain always a negative experience or can it actually enhance creativity?

maxresdefault — Actress Cherylee Houston on the cobbles of Coronation Street with Lara Bloom, EDS.org

Many of us bloggers use writing as a creative way in which to help our own situation – this may be through connecting with others, supporting others in similar situations and reaching out for support ourselves – but more often than not actually writing about our experiences and feelings is a cathartic experience in itself.

Writer Jack Thorne

Performance artist Martin O’Brien

Nearly everyone will be able to identify with some part of this programme and I hope that you find it inspiring. Enjoy!

The Agony and The Ecstasy

Further reading : The Pain and Performance Artist Martin O’Brien – an essay

Photos from Google Image search

Today, You beat Me

On Apr 2, 2017Mar 25, 2019 By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Invisible illness, Poem13 Comments

Today, You beat me,

I woke with You again

Wrapped about my back like a lover,

Pulling at my limbs

My shoulders splayed

My joints pulled with gravity.

Today, You never let up.

I tried to lose You

But You brashly force out the monster,

The worst version of myself

Cross and bitter,

My loved ones suffer. SONY DSC

Today, You rob me.

My time is destroyed,

I cannot sit and idle in peace

For my body betrays me,

As you are with me

Within, trapping me.

Today, You beat me.

My body is weakened

And tears have fallen as spirit breaks.

So, so tired, no way back

I am bereft.

Pain, You have won.

Claire Saul

Today you beat me pin

Are you a Chronic Illness Blogger?

On Mar 6, 2017 By Claire Saul (PainPalsBlog)In Blogging, chronic illness18 Comments

Calling all bloggers – do you write about chronic illness? Have you found the Chronic Illness Bloggers yet? We are a group of like minded individuals who link up and support each other on our blogs, Facebook pages, Twitter, Pinterest, Instagram….you get the idea.

Our blogs range from posts on individual illnesses – pain, fibromyalgia, EDS, mental health, migraine, Lyme disease, to name but a few – to reviews of products, books etc., coping mechanisms, recipes, blogging tips and living life! Come and join us.

cibloggersinvite

“5 Things Not to say to Someone with Chronic Illness” from ChronicMom.com

On Feb 13, 2017 By Claire Saul (PainPalsBlog)In chronic illnessLeave a comment

Have you met Shelley at ChronicMom.com? If not you should visit her site and some of her great articles – this one follows on from my last one beautifully.

5-things-not-to-say

“When you have a chronic illness you tend to get the same reactions from people over and over again. As much as you try to remember that most people have good intentions being regularly put into a position where you have to defend your illness is exasperating. Here are some suggestions for what not to say to someone with chronic illness:

Saying things like, “But you don’t look sick”!

It’s really nice of you to say that I look good, but I have an invisible illness. You can’t see my pain, but believe me it is there. On a regular day I’m in more pain than most people could ever imagine, but I’m very good at hiding it. If you look closely you will notice that I hold my body in a different way than most people. You may notice the lines of tension if I’m trying to keep the pain at bay. You may notice that I’m especially quiet. You may notice that underneath my makeup I am pale and have huge circles under my eyes. You may notice that I’ve gained some weight lately, because I’ve been in too much pain to exercise and my body is too messed up to regulate correctly. You may notice that I seem spaced out, and that’s because I had to take pain medication that day.

The signs are there. Even if they are not visible immediately. The more you spend time with me, the more you will notice. My invisible illness will become more visible to you.”

To read more please go to:

5 things not to say to people with chronic illness

A Chronic Comparison?

On Feb 11, 2017Jan 6, 2018 By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Ehlers Danlos Syndrome, POTS, Spinal cord stimulator14 Comments

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

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

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

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

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

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

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

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

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

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

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

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A Chronic Christmas – inconvenient illness for the holidays

On Dec 28, 2016 By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Disability, Disability Aids, Ehlers Danlos Syndrome, POTS2 Comments

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so. Blog posts, social media & all things requiring thought or energy have been low down the list of to dos. Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help. Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds! img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays? When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks. I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life. POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

Uncle Dunc doing his bit!

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute. My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert! I have cancelled coffee & lunch, rearranged and then the same again. We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments. I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants. Fantastic! One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway. Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs. We were both exhausted and if ever there has been a time to feel light headed this was it. Then I remembered why I had put them on. I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!! 30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it. About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks. I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it. I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket. I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital. The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment. I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door. I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!! He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company. The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it 15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough. So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine. This left me alone with the teens and I did enjoy the couple of days I had to myself. I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful! We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl. She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts). img_20161124_193246307 img_20161228_093523565_hdr

So it really has not been all bad. I have missed writing and the support of my social media chronic pals, but I know that you all “get it”. Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

img_20161225_093702042_hdr — Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday, Claire x

15338510_1209032889189499_2373536109025034240_n — The beautiful Italian home of Audio Deva

A Year on…life as an #EDS zebra with a spinal cord stimulator & #chronicpain

On Sep 22, 2016Jan 17, 2018 By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome5 Comments

I’ve really struggled to get my act together over the last 10 days and write. You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions! So this also means I’ve been blogging for a year.

My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote. At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth, when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus. I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me. I am really grateful.

I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery. This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it. It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.

SONY DSC

But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest! Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure. I have permanent nerve damage & a permanent genetic condition. Would I go down this route again? Absolutely. Whilst the scs is not the be all and end all for me, it has given me relief and some control back. I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours. A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again! I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis. But….I still envy my friends who are able to have them on all day!

I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago. It was not easy! In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again. A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling. I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it. But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results. My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.

File 26-08-2016, 12 56 25 — Blue POTS fingers

No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.

Positives from this last year have been joining social online communities. I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations. The realisation of how many of us there are and how many families who support & are supported is simply staggering. To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.

I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age. I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!! There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks. They should be so lucky to have the choice – and only one scar – they should see my patchwork. We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.

On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog. The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub! The second is The Book Club on facebook which has been amazing. 14222267_10154600381361495_2740355709948892258_n I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here. Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people. Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.

At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?). But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship. A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!

dscn1846 — A year on out for Lucy’s birthday

dscn1828 — With 3 generations….birthday girl with mum and grandma

#Olympian despite #chronic illness

On Aug 10, 2016Oct 6, 2016 By Claire Saul (PainPalsBlog)In chronic illness4 Comments

I just want to give a shout out to the amazing Siobhan Marie O’Connor who has won a silver medal in the 200m swimming medley. Of course I support her because she is British, but I support her and salute her for succeeding in spite of the chronic illness that she lives with every day.

Siobhan has the debilitating condition ulcerative colitis which is hard enough to live with day to day for the average person, but for a world class athlete it is a major feat. To balance the demands of daily training sessions, early mornings, study, travel & dietary requirements for training with the symptoms that accompany inflammatory bowel disease – this 20 year old young lady has deserves all the accolades that will come her way.

105301452-Connor--OLYMPICS-large_trans++ZgEkZX3M936N5BQK4Va8RWtT0gK_6EfZT336f62EI5U

(Idiots guide to inflammatory bowel disease – UC & Crohns – to follow!)

Taste Buds, Drugs and Red, Red Wine

On May 4, 2016Jan 18, 2018 By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, Medical, opiates, opioids, Pain relief8 Comments

miley-tongue A visit to the dentist got me thinking again about what our medication does to us. I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers! Quite a feat at my grand old age as my kids remind me. Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!

My dentist actually knew what Ehlers Danlos syndrome is and what a spinal cord stimulator is and I have to say, this impressed me. He knew that EDS can cause mucus membranes (the mouth lining), to be drier than normal and that the various drugs we all take for chronic pain can also cause oral problems. Of course he spoke to me about the importance of good mouth care, dental hygiene, flossing etc to keep my gums as healthy as possible, but it got me thinking about some other side effects of the drugs, particularly opiates.

images (26) In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine. I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!! The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found. More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome. I have no idea if it is still there, but it holds some great memories.

After the drowsiness, one of the first side effects I noticed when I started my cocktail of drugs was a change in my taste buds. Particularly for red wine! I know, I know, as a responsible now unregistered nurse, I must tell you all that it is never wise to mix strong drugs with alcohol. All the packaging tells you so. images (27) But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine. What on earth was going on?? Did I ever remember to tell my patients that favourite food and drink might become unpalatable? In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs. A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.

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Red Red Wine

Then we come to the eyes, more mucus membranes beneath the lids. I wear contact lenses and have done since I was 14, but in the last couple of years my eyes have become noticeably more dry and irritated after a shorter wearing time. My optician wasn’t surprised after he asked which drugs I took – at the time oxycodone, lyrica/pregabalin, mirtazepine and fluoxetine. These may seem like such small things, and really they are, but they just add to an already difficult situation.

There is light at the end of the tunnel. Whilst I am still on various drugs and still suffer brain fog, I am finding that my taste is altering again. My mouth remains dry and at times my gums are sore, but I can drink and more importantly ENJOY a glass of red wine again!! Cheers…

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