It’s been a while since I posted a blog entry and I thought it might be useful to talk about how I coped when covid hit me. 

My Self-Management routine was going really well prior to getting covid, I was walking as often as possible, swimming in the sea when I could and I had also added in 30 mins on an exercise bike (static) 5 days out of 7 after being involved in a research study at Bath University, I will include details at the end. I was also consuming less calories and losing weight thanks to Racheal and her research.  

Becoming a successful chronic pain self-manager is far from easy, it takes a lot of trial and error to find the activities that suit you because as we know there is ‘no one size fits all’ when it comes to chronic pain! We all have different abilities, different likes and dislikes etc. Once we have found the things that we enjoy doing we then have to build them into a daily routine at a level we can manage whilst not overdoing it and getting into that ‘boom & bust’ cycle. 

It is fair to say I had found my groove with my activities, that sweet spot of what I could cope with comfortably. 

It also takes a level of dedication; repetition is the key here! In the same way we would have taken a medication every day, we also have to perform our self-management routine every day for it to be effective, we might not always want to, but I have found much more relief from my chronic pain and associated symptoms by following my routine daily as much as possible, obviously there will be occasions when we need to miss a day but I try to keep that to a minimum. 

Enter covid!! 

I felt quite poorly very quickly and spent the next three days in bed feeling completely lifeless, with absolutely no energy whatsoever. 

It was about four or five days before I started to feel a little better and of course my routine had gone out of the window during this time. I felt wiped out and couldn’t have done it if I’d wanted to.  

It was 11 days before I had a negative lateral flow test and when I went out I found walking extremely difficult, I simply had no oomph, no power, I was so slow, I was not breathless like some people report but I would hit an invisible wall and need to stop for a few minutes before continuing. I tried to do the exercise bike routine and managed 10 mins every few days, this was extremely hard to accept initially, I wanted to get back to normal and it became clear that wasn’t going to happen for a little while. I listened to advice from Karen my wife and friends who are working in the field of long covid research and dialled back my efforts somewhat, remembering to take a break sooner than I needed to, not pushing myself too hard. It began to pay off I’m happy to say and several weeks later I am starting to improve, the fatigue has significantly eased, and I can walk much easier, I am managing 15 minutes a day on the bike and swimming when possible. I have also reduced my calories again which lapsed during my covid recovery!  

So, I am getting back on track with myself management routine once again. I suppose the message I want you to take away from this blog is that we need to listen to our bodies and rest when we need to rest, when we live with chronic pain or any long-term health condition the road is never a smooth straight line, we are always going to encounter some bumps in the road, but with self-compassion we can overcome them and move on again!  

 

Until next time  

 

Louise  

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November 8th 2020 and it’s my 53rd birthday!

The country is in its second National Lockdown because of the Covid19 virus and once again we are encouraged to stay home!

We are living in very uncertain times and this plays on our minds and makes us worry, which in turn makes our pain worse.

I’ve been trying to think about all the positives in my life, my 53rd year is so much better than my 43rd year!

I feel as though I slept through my 40’s thanks to opioids , I didn’t know then however, that most of what I was going through was because of the side effects of long term use of opioids. I thought my fibromyalgia and arthritis was gradually getting worse.

Birthday picture from 2016

During my 40’s my health gradually deteriorated to a point where I was living between my bed and my reclining armchair. All movement was excruciatingly painful, every bone in my body ached, every joint hurt beyond belief, I could not stand to be touched because the lightest of touches was painful to me, something my family found really hard to believe, I’m sure they thought I was exaggerating!

I couldn’t tolerate any noise in the house, no music unless it was hardly audible. Sounds were painful! Voices were painful! This is called hyperalgesia.  I never took phone calls, we rarely had visitors and therefore didn’t see the family very often, something that makes me extremely sad on reflection.

Over the course of my 40’s my weight increased until I was almost 25 Stone and of course this made the pain even worse. I’m sure everyone thought I just sat home and stuffed myself silly but that wasn’t the case at all. I was constantly trying to lose weight but no matter how hard I tried it just didn’t happen!

I now know that to lose weight you need to have all the key components a) good balanced diet b) good sleep c) exercise and if you only have one of them it doesn’t happen. I only had a good balanced diet.

I also had some very strange symptoms, my teeth hurt more often than not and yet my dentist could find no reason for this. Eventually, however, he discovered that my big back teeth had started to rot from the inside out. The outside appearance of these teeth looked healthy. My brilliant dentist decided to do some X-ray’s and that’s when we discovered what was happening. I’ve since discovered that this is a common side effect of long term use of Opioids. Many people have lost all their back teeth because of Opioids and I lost 4 big teeth. Luckily I came off opioids and my dentist is working hard to save the rest but many people are not so lucky!

My skin suffered too. I developed a condition called Nodular Purigo which meant I had nasty sores on my arms and legs, I still have the scars today. Nasty boils from Hidradenitis Superativa was another skin condition that got totally out of control. It’s something I’ve always had but only mildly, that changed during my 40’s and led to me being on long courses of strong antibiotic combinations, which also have their own unpleasant side effects. I  had to have a huge nasty one cut out of my back and it was horrific. I developed many weird symptoms during that time, some of which seemed to confound the doctors too.  This has all gone now I’m no longer taking opioids.

I was so depressed with all this going on and I just got worse year on year.

Fast forward to 2020 and I’m celebrating my 53rd birthday in lockdown but I have SO MUCH to celebrate! The last three years since stopping the opioids I actually feel ALIVE!!!!!

I have loud music wherever I go and I dance like no one is looking at every opportunity and sing out of key too. 😂

I walk everyday even when my pain is bad and I can’t go very far, just walk as far as I can that day. I do it because I discovered that I feel so much better when I go outside and walk, experience nature, change my surroundings, breathe fresh air! It triggers the endorphins, the body’s natural painkillers! The ‘feel good factor’ lasts for hours!

 

Of course as soon as I stop and sit on the sofa, my knees begin to stiffen up and hurt because I have arthritis, but I can control it by keeping active, not sitting for too long. When I have a flare up of pain I will take paracetamol and occasionally naproxen when the pain is really bad.

As we go into the winter months it becomes even harder to motivate ourselves to go out and walk, the skies are often grey and wet but I’ve discovered that it ALWAYS looks worse from inside our cosy warm homes which makes us think ‘I’m not going out in that’ but I guarantee you if you dress for the weather and push yourself out the door even for half an hour, even if it’s only to the end of the street, you will feel so much better for doing it!

There is a saying I love ‘there is no such thing as bad weather, just inappropriate clothing’ and that is so true! Invest in some waterproofs and spend as much time as possible outside this winter. Being outside in nature is the best antidepressant ever!!

You don’t have to walk miles, just go a bit further than you did yesterday! If you don’t normally go walking be careful not to push yourself, remember PACING, increase gradually.

My new passion is swimming in the sea and I am about to go and get in the sea at Torquay with my wife Karen for a birthday ‘SWIMBLE’ (bobbing about / moving) in NOVEMBER! 😃

Another first! We are aiming to carry on into the winter and I have bought a 2mm wetsuit costume to give my core a little protection. The pain relief from getting into the sea is astonishing and we are now addicted. The benefits are well documented, as I mentioned in my last blog post, and it’s also thought to stave off dementia.

I want to take the opportunity to mention that I am writing about MY experience with opioids! I was taking a very high dose over a very long period of time, which evidence now shows is not effective for chronic pain. I advocate for better education for patients BEFORE taking these drugs and more frequent reviews, in order to spot the signs of side effects.

Some people find that low doses of opioid medication enables them to live a life they could not normally achieve.

 

Take care of yourselves, I’m off for a swimble 🏊🏼‍♀️

 

 

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I wanted to share with you all, my latest discovery! During the lovely hot weather that we experienced here in the UK about a month or so ago, Karen and I ventured, tentatively, into the sea! Karen couldn’t swim and had only been in up to her knees and I hadn’t swum for over 20 plus years!

It was glorious sunshine and the sea was welcomingly cool, neither of us swam though, we just bobbed about a bit! 😀

The thing we were both surprised by was how good we felt whilst we were in the sea, just up to our necks. We continued to go to the beach, visiting different ones in our local area, throughout the lovely hot weather. We took our beach tent to sit in and often my daughter and grandson would come too. Gradually our confidence began to grow and we started to swim a bit, even Karen although she will tell you it’s not swimming it’s ‘doggy paddle’, either way, it’s moving along in the water and it feels amazing!

We would come away from the beach feeling satisfyingly tired! We both began to notice that our pain would stay much reduced for several hours after swimming! It was a complete revelation to us! The more we read about sea swimming, we discovered that it’s well documented that swimming in the sea brings enormous health benefits!

Take a look at these links to read more about the benefits.

https://www.outdoorswimmingsociety.com/new-research-reveals-sea-swimmings-effect-on-wellbeing/

https://www.nhs.uk/live-well/exercise/swimming-for-fitness/

The feeling of weightlessness that I get when I’m swimming is just amazing, moving through the water, I forget about absolutely everything except me and the water!

We have progressed to moving out of our comfort zone by the shore and now swim up and down the bay using the sets of steps as a visual marker of our distance, it just feels fantastic to be floating along in the water. We are finding that, just as with our walking, each time we swim our ability improves, our confidence grows, and of course we are beginning to reap the benefits!

We are completely hooked now and hope to continue throughout the winter months too! 🥶🏊🏼‍♀️

We have bought second-hand wetsuits to buffer the cold a little and we will see how it goes!

There is a little community of swimmers that go to the same stretch of the sea wall as us, all varying ages and abilities and they are all so friendly!! So I would urge people to look into it even if you don’t have anyone to go with, if you use Facebook have a look for your local sea swimming group, most groups are extremely welcoming to new members, and becoming a member is all about looking out for each other! You don’t have to be strong swimmers, or even swimmers, if you just want to go and bob about a bit you will be welcomed!

More people than ever are swimming in the sea the moment because lots of pools are closed or if they are open they have quite tight restrictions!

We prefer high tide because the steps where we swim make it seem like we are stepping into a giant pool, but you will have your own preference, just look up your local tides and do t attempt to swim in a rough sea!

Go swim with the fishes for pain relief and mental health therapy!  😊

 

 

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I thought it might be helpful for others if I wrote about how the side effects of opioids adversely affected my life!

I took opioid pain medication for around 13 years to treat the debilitating pain of Fibromyalgia and Osteoarthritis and initially they were brilliant, allowing me to go about my daily life again, work as a care assistant in a 40-bed nursing home and look after my four young children and home!

When I was given MST Continus I wasn’t told how addictive it was, that if I stayed on it too long I would become poorly from the side effects or that my nervous system would become sensitised so that my pain would be worse than ever! If I had been I would not have taken them!!

It was over 16 years ago now and not all the evidence was available at that time!

Over time I began to develop strange health problems and notice existing conditions gradually worsen in severity!

I would suffer sudden severe pain in my chest, it would cause me to double up in agony, and even breathing would be painful. I remember one such occasion particularly well; I was preparing to have friends over for dinner and in the middle of cooking the meal, having been perfectly fine during that day,  suddenly the pain struck and almost floored me, it literally took my breath away. I was determined not to let it spoil the evening and took a couple of paracetamol and carried on with the preparations. Over the course of the evening, the pain got much worse and was seriously affecting my breathing because I couldn’t expand my diaphragm without excruciating pain. My friends collectively decided to call an ambulance, they were terrified and not at all convinced by my futile attempts to reassure them it would pass! The paramedics that attended suspected a heart attack and hooked me up to do a heart trace in the ambulance. Now I was terrified! The trace didn’t detect anything out of the ordinary but in every other way, I was presenting as a heart attack victim if only mildly. I was given some gas and air for the pain on the journey to hospital where I spent two whole nights while they gave me a thorough check. They couldn’t understand what was going on but it definitely wasn’t a heart attack! Of course, I was relieved to hear this but it was a complete mystery. One that would be repeated several times during the thirteen years on opioids.

I would also suffer from the most hideous skin problems, I had a history of mild Hidradenitis Supurativa (boils) but it had always been mild and now they were much much worse and the pain from them was totally off the scale. Antibiotics wouldn’t help at all and just make me feel worse. The doctor even tried a combination of antibiotics which helped a little but never got rid of it, they would be in my groin, under my armpits, under my breasts, on my shoulder blades, behind my ears and on the insides of my thighs! It was truly hideous and made me very depressed as if my pain wasn’t bad enough already! This continued on and off throughout my time on opioids!

I would also have repeated chest infections that would linger on and on despite antibiotics and steroids. If I caught a cold I would be floored for at least a week whereas my friends may have been in bed for 24/48 hours. Then the after-effects of the cold would hang about for a few weeks. Often leading to an episode of sinusitis or a nasty cough.

 

At some point, I was switched from MST to OxyContin a synthetic morphine derivative tablet, with Oxynorm liquid for ‘breakthrough pain’.

This is when I believe I began to get worse.

 

One of the biggest issues I had was with hyperalgesia which is an enhanced sensitivity to pain! It became so bad I could not tolerate the cat walking across my lap because the pain was unbelievable! I put this down to my Fibromyalgia worsening.  If someone nudged me it felt more like a punch, if I got cold my body would tell me I was freezing! The same if I got hot.

Mouth infections was another one! I would have repeated episodes of oral thrush which was also extremely painful! My oral health was great so I could never understand why I kept getting this?

 

Painfully sore gums too and most bizarrely the dentist could not seem to numb me for dental treatment and would need twice as many injections as he would need for others!

Another dental phenomenon which didn’t present until the last couple of years on opioids was how I would go to the dentist with pain and he couldn’t find anything obvious so he would do an X-ray only to discover that the tooth (usually the big back teeth) had rotted from the inside out! He was left with no option but to remove the tooth! I lost 3 big back teeth in total! Then I was off the opioids and my dentist has worked incredibly hard to save the rest which I’m very grateful for!

I have since discovered that this is not uncommon in long term Opioid use!

Lack of sleep was a problem, I couldn’t sleep at night but would end up needing to have an afternoon nap especially during the latter years of my Opioid use! I would doze off almost every time I sat down, in waiting rooms,  in front of the TV, in company, even whilst on FaceTime calls with my grandson! That upset me greatly, my family just accepted that this was how it was for me. I was diagnosed with sleep apnoea a condition that meant I would stop breathing briefly during my sleep so I was given a C-Pap machine to use at night which required me to sleep with a mask on, connected by a long tube to a machine which supplied me with air delivered at a continuous pressure. I no longer have this since coming off opioids!

I had gradually put on more and more weight until I was a touch under 25 stone, I tried everything to lose weight and I now know it was never going to happen because I wasn’t sleeping, I had become almost totally inactive and I was on a carrier bag full of medications!

Something that I feel is never discussed is the effect on a person’s sex life! Opioids suppress the libido in both men and women, it’s called Opioid-induced Sexual Dysfunction. It’s so insidious that often you don’t notice it, I believed for instance that my lack of interest was because I was in pain because I was tired, etc etc and that is often accepted and never questioned by either partner because why would you expect someone in so much pain and discomfort to be interested in sex? Actually there is no reason why someone living WELL with pain shouldn’t absolutely expect to have a normal sex life!

 

The last and worst of all was the Opioid-induced impaction…. I could NOT have a poo, to put it bluntly! It came on suddenly one Friday night, I had not been having any difficulties going to the toilet, I was taking sachets of laxative every day to prevent constipation caused by opioids. I went up to the toilet and could not go, that was it, as simple as that, by the next day I was in agony, I had tried and tried but it just wouldn’t happen, I had spoken to the out of hours duty doctor who prescribed more laxatives, nothing, the pain was gradually intensifying! By the middle of Saturday night my wife called an ambulance because I was crying and writhing in agony. A paramedic came and couldn’t help but called the duty doctor who came out and called the district nurse to come out and administer an enema by which time it was Sunday morning, by Sunday night I was in so much pain my wife called another ambulance and I was taken to hospital with gas and air! On Monday I was taken into theatre where at last the problem was dealt with. I’m sure you can imagine the humiliation and massive distress this caused me! My wife was also distressed because she was powerless to help.

This happened to me TWICE!!!!

The pain, the emotional distress, the embarrassment I went through just added to my depression!

The theatre staff told me that I was not unique, it happens to many people who are taking opioids!

After the second time, I needed no further incentive to get off the opioids completely!

My life couldn’t get any worse!

 

I am so pleased to report that quite quickly after coming off opioids all the weird health issues I had collected over the 13 years started to disappear totally and the ones I had originally before opioids have returned to being mild.

 

I know this all sounds very scary and believe me it was but it also has a very positive ending!

If you recognise any of this in yourself or someone you know please know that there is light at the end of the tunnel, stopping or reducing opioids could be the answer for you/them too!

 

IMPORTANT

Opioid Pain Medication MUST not be stopped suddenly! You MUST ALWAYS seek advice from a Doctor, Pharmacist, or other Prescriber before reducing or stopping.

 

 

 

 

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Wow…. Day 97!

Even more restrictions have been lifted with more to be lifted in just over a week’s time. How do we feel about this I wonder? I have very mixed feelings about the whole situation, after all, the disease hasn’t gone away, lifting restrictions doesn’t equal an ‘all clear’. I like many others, feel quite anxious about it, I don’t want to become ill, and I don’t want my loved ones to become ill with Covid19!! I shall continue to do what feels safe for me, I will continue to wear a mask in shops and busy places, regardless of what others are doing or what the ‘latest advice’ is!  I shall continue to wash my hands and use antibacterial hand-gel frequently. My advice to others is to do what feels safe for you!

Covid19 has placed extra stress on everyone and those of us who live with pain know that stress increases our pain so we need to feel as safe as we possibly can! I think we are still on the ‘corona coaster’, but maybe the peaks and troughs are not quite as steep as before.

It’s been a week of firsts for us, we were able to meet up with the family at different times for a ‘socially distant’ walk which was lovely! I am still craving cuddles but I’m content with being able to spend some time with them.  I know how lucky we are!  Karen and I ventured a little further afield for a walk, we went to National Trust Parke which is about 10 miles from home and is a beautiful woodland estate with a river running through it!  It was so beautiful to be there and walk through woodland drinking in the sights and sounds, in-fact I’d say it was a real tonic for both of us. It was a treat not to be walking on tarmac! It had been too long. Social distancing wasn’t a problem, everyone was being mindful of others  and we were even able to find a tree stump to sit on beside the river for our coffee break.

It’s a sad byproduct of Covid19 that when we see other people coming towards us now we are anxious, we do our utmost to avoid each other, this is totally the opposite of how we were pre-COVID and although we have adapted to this, it still feels horrible!

We had two of the hottest days of the year so far and I was craving the sea which led us to think about where we could go that might not be as busy as the main tourist beaches. On one of the days we incorporated a short coast path walk so as to arrive at the beach as most people were beginning to leave which was lovely, we only paddled on this occasion but again it was a real sensory treat, the smell, and sound of the ocean, the heat of the sun, plenty of room to relax!

                     

The following day we went to a different beach where the water felt warmer and so I took the plunge and went in for a swim, my first swim in about 20 years and boy it felt good!!

I have been off Opioid pain meds’ now for just over three years and still, my recovery continues, I am still achieving things I thought I would never do again! My weight is still coming down, my strength and stamina are continually improving.  My knee, which had been troubling me through most of lockdown really enjoyed the cold water and action of the waves. It ached slightly the next day but that has only prompted me to decide that swimming in the sea needs to be on my agenda frequently, hopefully, all year round if I’m brave enough. My limited understanding tells me that if I keep it up it will strengthen the muscles around my knee in a way that my walking doesn’t.

I know a lot of people do cold-water swimming or ‘wild swimming’ to help them cope better with pain. I just need to regain my confidence in the water.

I remember after I came off the opioids,  being told by a really lovely pain physiotherapist that I needed to incorporate more movement (his preferred word over exercise and now mine too) gradually and that it should be movement that I enjoyed and that I could realistically repeat daily and gradually increase! He showed me how to set realistic goals and how to pace myself. Which is vitally important if we are to avoid the ‘boom & bust’ cycle that sets us back. You know, we cram as much as possible into that ‘good’ day and then have increased pain for the next few days! 🤭 we all do it but pacing and goal setting will give us more consistency.

If you haven’t already, check out the ‘Ten Footsteps to Living Well With Pain’ here on this website which will give you some extremely useful tools to help you live well with your pain including Footsteps that cover pacing and goal setting, you can even download and print an activity diary, daily pacing plan, smart goal sheet & a goal ladder. Have a look, take one ‘Footstep’ at a time! 👣

https://footsteps-festival.co.uk/ten-footsteps/

https://twitter.com/loulouscorpio

 

 

 

 

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Well, here we are on Day 84! I think we were all hoping it would be all over by now, sadly not, and I think we will have certain restrictions in place for some time to come! However I’m looking for some small positives to take away from this unprecedented experience. I know that is extremely hard when we look at how many people have tragically lost their lives during this awful pandemic, which is why I am only looking within my own circle for those positives!

So what are they? When lockdown began I was terrified about how I would cope without our daily long walks, walks that only began after we had driven to somewhere, new if possible, walks that would last most of the day! The restrictions meant that we could only walk locally 😱 and we couldn’t walk all day, once a day for our exercise!

So walk locally we did, we had no choice like everybody else; wow….what a lovely surprise we got.  Local was beautiful, far more beautiful than we had ever given it credit for. We know we are extremely lucky to live in a rural area with country lanes to walk. This knowledge helped us settle in quickly to our new limited regime. Others couldn’t do this at all so we would darn well make the most of what we have.

To fill more time we decided now was a good time to reclaim the garden we once loved but had neglected for three years, which was now overrun with brambles and weeds, potted plants completely pot bound.

Before lockdown we used to look out at the garden with mixed feelings, sadness that we had ‘no time’ to deal with it, and dread, where would we even start now?

Enforced time at home meant that we both viewed the garden as an opportunity to really get stuck in, it became a project, if we couldn’t transform it now when could we, would we?

What surprised me more than anything was how much I enjoyed it, at first it was challenging because I was struggling with a painful knee that really didn’t want to bend, but being in the garden served as a fantastic distraction from the pain and meant that I was keeping active.

It wasn’t long before we started seeing the results of our hard work and that served as more incentive to keep going.

It occurred to me after several weeks that before lockdown I had become subconsciously terrified to stop walking! Since I came off the opioids 3 years ago we had adopted a daily routine of walking! Walking as far and for as long as possible! I had gradually built up my fitness & stamina, and lost eight and half stone in weight! I was capable of walking up to 8 miles on a really good day! I think somewhere in the recesses of my mind I believed that if we stopped, if we didn’t walk EVERY DAY I would somehow relapse and become the poorly, unfit, unhealthy, UNHAPPY person that I was three years ago!

SURPRISE 🎉🎉🎉 That didn’t happen!!! Our local, two and a half mile daily walk was enough to keep up the fitness I’d built up AND meant we had the time to ENJOY being at home, and spending time in the garden! Nothing bad has happened as a result of breaking that daily routine, it was a revelation to me, it’s taught me some important lessons about myself! More importantly, it’s made me realise that I was being too hard on myself and in turn, on Karen too! I am embracing this as the biggest positive to come out of lockdown.

It’s not the only one, you will remember that during the first six or seven weeks I was baking cakes, scones, biscuits and all things yummy which of course meant that we were also eating these delights 😋😃🍰🧁🍪 it was somehow comforting to know that we weren’t alone, the entire country was baking which of course was evident in the supermarkets with the lack of flour and other ingredients which any other time would be plentiful! It didn’t take long however to see the scales going up!!

Before lockdown my weight loss journey had hit a plateau and wasn’t budging, now was a good time to call a halt to the self-indulgence and get back on track! A month ago I joined a very well known healthy eating club, now running digital services only, I am so pleased to report that I have already lost one stone in weight!! This means I’ve lost my lockdown bulge and some, it’s kickstarted my weight loss …. YAY!! 💪🤗

Losing a stone in weight has had another huge benefit too, I have taken the equivalent of seven whole bags of sugar off my shoulders! My painful knee is certainly very very grateful for this and has rewarded me with less pain, I still have to look after it and keep up my physio exercises but wow, it’s so much better than it was when lockdown began.

My knee also gave me a small positive though, strange as it seems, it meant I needed to revisit my ‘flare-up tool kit’, and this time I had to delve right to the bottom and find the tips and tricks I hadn’t needed for ages! They worked though and proved to me that having a ‘flare-up toolkit’ was essential! If you don’t have one I urge you to put one together! Fill it with all the things that help you feel better when the pain gets worse, whatever works for you, I have a wheat bag that I can warm up in the microwave for example but it’s also things like mindfulness, sitting in your comfy armchair and reading a good book or listening to music! Whatever soothes you and makes you feel a little better, it’s more of a mental checklist of things that have helped you before, all the self-help techniques you may have learned on your pain management program! Pull it all of the toolkit and examine them all and see what will work for you during this flare. I am always adding to mine as I learn new tips and tricks from others. It’s always comforting to know that when a flare-up strikes you have that toolkit tucked away!

Lastly, and most importantly is ‘self-compassion’ we all have a tendency to be way too hard on ourselves and I am certainly no exception! Constantly berating ourselves for not being able to do something, especially something we used to be able to do easily. Be kind to yourself, it doesn’t matter what you ‘used’ to do, what matters is right now, and when your hurting you need to be kind to yourself! It’s not easy and believe me this is something I struggled with and still do sometimes! I believe that one of the biggest lessons we need to learn is ‘acceptance’ that does NOT mean accepting that things will never be any better, it means accepting that we live with pain! There is a big difference and as we know, how much pain we are in goes up and down, acceptance is about realising pain is with us, it’s unwelcome but it’s here and so we need to learn how ‘LIVE WELL WITH PAIN’ and you will find lots of advice on how to do that if you explore the other areas of this website.

Take care of yourselves 😊

 

 

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As I write this, lockdown restrictions are beginning to ease, and once again things are changing around us! There is more traffic on our roads again, more people in the supermarkets and more people have returned to work. Some services are becoming available again although not as we knew them. I expect like me some of you are very concerned about the lifting of restrictions and how it will affect us. Karen & I are continuing to walk locally and wear our masks whenever we have to shop, avoiding anywhere that people may gather.

I know that Pain Services are working extremely hard to develop as quickly as possible new ways to deliver their services including online via video consultation and telephone calls to patients, they are hoping to be able to offer Pain Management Programmes and Getting Started with Exercise groups too and although this may not be the way we would all prefer to access these extremely important services, I believe it’s the safest way for the foreseeable future and in fact, may be preferable to many of us! The joy of not having to attend an appointment at a hospital that we have had to travel to get to, some of us on public transport! I remember the stress of planning a trip out for an appointment, “will I get there on time” “will I be able to park” “how long will I be waiting” these and other concerns all add to our stress which in turn ramps up our pain!!

I think we must remember that we are ALL having to find new ways of doing things, we need to work with our clinicians to make it work! That will involve speaking up when we think something isn’t right for us! Do not be afraid to speak up because the clinicians are working in a completely new way and need all the feedback, they can get on what is and is not working!

My pain has been so much better since I last wrote. Something that has made a huge difference to me is my self-belief that my knee will recover, and that there is NO damage!

My physio was able to review my X-ray and was able to tell me it was fine and not “bone on bone” like I had been previously told!

My knee has since improved even more which emphasises to me the importance of language used by clinicians when explaining our results! Our brains are immensely powerful and if we hear ‘bone on bone’ we can very soon begin to picture that and then feel it!!

I’ve been doing some strengthening exercises and my pain is diminishing day by day!

I am a firm believer that we can very easily talk/think ourselves into increased pain and debilitation, and no I am NOT saying it is all in our heads, it’s definitely NOT!! In the same way, we can encourage ourselves into decreased pain! We have to work at it though! And we need to keep moving because “Motion Is Lotion’

Take care of yourselves

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It’s been a pretty good week for me this week, apart from trying to invent a new hairstyle out of my lockdown gabsnest!! The only comfort is that the entire country has bad hair right now.

My ‘coronacoaster’ has been mostly level for the first time since lockdown began, I have made a few changes which I believe have helped enormously!

I decided to join a well-known diet app and have therefore given up eating all the self-indulgent loveliness I was baking during the first 8 weeks of lockdown! Instead, I followed one of their recipes and made a low calorie ‘Zesty Soaked Sponge’ with the juice and zest of lemons and limes, unfortunately, I need to perfect this so no picture I’m afraid, however the point is it’s possible to still enjoy #BakingTherapy on a diet and just make delicious low calorie, low sugar, low-fat recipes instead! I promise a picture next time 🤞😀

Cutting down the sugar especially has reduced my pain and inflammation considerably and therefore helped my knee!

Along with my change in diet I have been sticking with my physio exercises and our daily local walk, which has been so much nicer with the sun on our skin! A good dollop of vitamin D!

At the beginning of lockdown you may recall that my knee was extremely painful but with the continuation of the physio exercises and keeping active on it with pacing breaks it is so much better and I’m confident of getting complete recovery from this painful spell! It’s so important to put the work in to get rewarded by recovery and then continue to look after the joint or limb going forward! As I’ve said before I think we all look for instant results and that is simply not possible! We have to work for it but my goodness it’s worth it! So I have Arthritis in my knees ‘so what’ I am NOT going to let it tie me to my armchair, I have things to do!! 😊

A really lovely unexpected thing happened to me this week too! I discovered an old school friend has been living at the bottom of our road for the past 11 years and neither of us knew it!!

We have since met up for a socially distant chat and will definitely be seeing a lot more of each other!

I hope you have all had a good week and your ‘coronacoaster’ has been on a level course!

 

Look after yourselves 😊

 

 

 

 

 

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Firstly I am sorry I didn’t do a blog post last week I have been quite busy with admin jobs, I have tried to pace myself and move between walking for my daily exercise, working in the garden and doing my admin. It’s been such lovely weather which I think must be helping us all get through these strange times; I know I wouldn’t have coped so well if we had constant rain since lockdown began.

My knee is improving thankfully, I had a video call with a physiotherapist who gave me some great advice and it’s helped me a lot! I have continued with the physio exercises I was given pre-Covid19 and of course, if we put in the work we reap the benefits, I think sometimes we expect instant results and when we don’t get them, we say ‘Physiotherapy doesn’t work’, I have also made this mistake in the past, now however I know that we have to work for the results. If something doesn’t work then the physiotherapist can make changes to the regime to address this but only if we inform them. Physiotherapy may not be available to us for some time yet and when it is I’m sure it will not be quite the same as it was before Covid19.

I know it’s difficult to find the motivation sometimes to get up and do something when we are in pain but I think we have probably all noticed that when we are busy doing something we enjoy, we don’t notice our pain as much, that is why I try to keep as busy as possible. Whatever gives you joy, knitting, sewing, drawing, colouring or model making, all of these things will help distract your brain from focusing on the pain. One of those things for me has been my #BakingTherapy since lockdown began, and since the last blog post I’ve enjoyed baking ‘Salted Chocolate Caramel Shortbread’ following the National Trust recipe, ‘Peanut Butter Cookies’, ‘Salt & Vinegar Chickpeas’ and Chocolate Mousse made from Aquafaba (chickpea water) ….. I had never heard of it until a Vegan friend told me about it.  My next attempt will be meringues made from Aquafaba.

I have to admit I am really struggling to get back on track with my weight loss regime. I am home a lot so I am baking and I enjoy baking naughty sticky sweet things. I am trying to be kind to myself and therefore I made a deal with myself that if I try to keep as active as possible and eat as healthily as possible then I could reward myself with a slice of something naughty. I think that’s fair under the circumstances. On a serious note, however, so much of what we eat can affect pain and inflammation and so I am trying to make sure I have a varied diet.

https://www.nhs.uk/live-well/eat-well/eight-tips-for-healthy-eating/

The ‘coronacoaster’ is still going up and down and sometimes sadness sneaks up on me, I am extremely lucky in that all of my loved ones are so far untouched by Covid19 but I still miss seeing them and hugging them, we are all so very lucky to have the Internet and the ability to see our friends and family ‘virtually’ but it’s not the same is it, so some days I get very sad briefly. Then I feel guilty for feeling sad because I know so many many people have lost friends and loved ones to this awful virus. These are normal feelings though so we need to acknowledge them but then let them go. The more anxious we get about the situation the worse our pain will be.

Karen and I bought ourselves a table tennis set this week, what a hoot that is and another way to stay active and have a really good belly laugh!! No….no photos of that!! 😂

Now is the perfect time to take up a new hobby or activity, we would never have thought about buying a dartboard or a table tennis set previously but now we are all looking for ways to stay active and entertained at home!

Go on try something new! 😊

 

 

 

 

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I came across a new word this week that I think aptly describes our emotions at this time ‘Coronacoaster’ I like it! I never know when my ‘coronacoaster’ is about dive but at least I know that for every dive it does it will go up again and just as quickly. I think it’s reassuring to know that it’s quite normal to feel like this and that we are all experiencing this ‘coroanacoaster’ ride together even if we are at different points along it.

When it began I couldn’t imagine how on earth I would cope with it and it’s hard to believe that we are already on day 40!  I think we adapting to our new normal quite well although I realise we are luckier than those who do not have an outside space to enjoy! Or those who live in tower blocks! If you are one of these people, I cannot pretend to know what it’s like for you or how you are feeling, but I would say that you should grab every opportunity to breathe in fresh air even if that’s only through an open window or a balcony door!

I am still struggling with my knee pain and this week I have had to reduce my activity a little to allow some recovery time! As I write this I am sat with a bag of frozen peas,  wrapped in a towel, on my knee to reduce the swelling! Karen and I did a 2.74 mile walk including the 195 steps up to the church this afternoon and I find that my knee actually feels a little better after it, after all ‘Motion Is Lotion’ 😄👣

I usually prefer heat to ice but I know ice is good for reducing swelling and I will do anything to ease the pain and discomfort except take Opioid pain medication like codeine! I have had some paracetamol and that’s all!

Karen and I have been starting our mornings with the NHS 5 minute morning workout https://www.nhs.uk/live-well/exercise/5-minute-wake-up-workout/  and that has definitely made a difference to how much energy and focus we have after waking. I would definitely recommend it, you start off lying down and gradually get up.

We bought a dart board this week from an online retailer and that’s great fun in the evenings and fantastic for keeping us off the sofa and active!

It’s quite hilarious too, we have to shut the cats in the lounge because our darts tend to miss the board all together sometimes and we don’t want to risk an emergency trip to the vet to remove a dart from one of them 😄

Gardening is still in the top 10 of things we enjoy to keep active, along with my #LockdownBakingTherapy which this week included Cheese Scones following the National Trust recipe and Zingy Lemon Cupcakes.

We found an old badminton set hiding in the shed and decided to give that a go earlier in the week and that too was hilarious and great fun! It took some time before either of us could actually hit the shuttlecock 😂 but we got there in the end and enjoyed it immensely! We did consider purchasing ‘Swingball’ but I think the rest of the country had the same idea as there isn’t one to be found anywhere online at the moment, which is good because it means everyone is doing their utmost to stay active!

We have a new project in the garden, a wildlife pond in an old white sink that contained a very pot bound shrub, will let you all know how that goes!

The biggest message in all this…keeping as active as possible is the best way to control our pain, being busy distracts the mind!

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