Friday, 13 March 2020

Self-isolation gives a small insight into the life of the chronically ill

It’s hard to do anything at the moment without hearing about the Coronavirus. Turn on the TV – there’s another news update; scroll through Twitter – every other tweet mentions COVID-19; or go to the supermarket and everyone is discussing panic buying and where all the pasta has gone. I don’t want to add to all this with another post directly about the virus, but I would like to talk about an indirect result. People are now being told to self-isolate for seven days if they begin to show symptoms and for a lot of chronically ill people, it has been quite difficult to see some of the responses to this. Self-isolation seems to be giving ordinarily healthy people a small insight into what life can be like for someone with a chronic illness or disability. 

Social isolation and being housebound is often part and parcel of having a chronic illness or disability. Obviously, everyone is affected differently by different illnesses, but a large number of chronically ill people will experience being unable to leave their house for months or even years on end. During my years of illness, I have been through periods of being housebound – too ill to even leave my house for medical appointments at times. And there are others who have it far worse – confined to their home, or even their bed, for year upon year with no end in sight. 

And it’s bloody hard; I’m not going to lie. Staring at the same four walls, only seeing close family (if you’re lucky to have them around) and having no idea how long this will go on for. Seeing the sun through your curtains but not being able to even go out in the garden to feel it on your face. Hearing people walking past your house, laughing and joking, and wondering when, or if, you will ever do that again. Seeing posts and photos on social media of friends going on days out, holidays or even just going to work, and feeling so far detached from the world outside your door. It gradually drains the hope from your body and leaves you wondering if you can carry on.


Over the last few days, I’ve seen so many people discuss how awful it will be to have to stay in your house for seven days and others talk about not knowing how they will cope with it. And I get it, I really do. If you’re healthy and have never had those kinds of restrictions put on you before, then I understand that it must feel horrible to suddenly have your freedom taken away from you. But that doesn’t stop me feeling upset and frustrated to see so many people complaining about a life that thousands of us have to live for years. 

Although the current situation is scary and worrying and that shouldn’t be dismissed, I do also feel that it’s important for us as a society to learn things from it. And a big part of me hopes that some people at least might realise what chronically ill and disabled people can go through on a daily basis. Being stuck inside, having to ask for help, your plans being cancelled, no contact with friends – all while dealing with the constant worry of illness. It isn’t just seven days isolation for a lot of people – there is no end date for many of us. We live every day trying to deal with complex health problems, as well as the grief and frustration that comes with missing out on things other people may take for granted, and having to cancel plans at the last minute. Going to the shops, meeting a friend, a day out, a holiday, your birthday, your wedding, a vital medical appointment. The list goes on.

The majority of people who have to self-isolate will hopefully recover within a couple of weeks and can go back to their daily lives. And as the pandemic reaches its peak and begins to slow down, lockdowns will end, events will be rescheduled, holidays rebooked and some form of ‘normality’ will resume. But those chronically ill people won’t be leaving their houses with everyone else. They will still be sick, held prisoner in their own homes. 

And I really just hope that, as people become well again, they will remember what it felt like to suddenly lose their freedom and be confined to the house. And that maybe, chronically ill and disabled people might be shown a little more empathy and understanding for having to go through this every day. There are so many ways you can show that you care about someone that’s housebound (either through self-isolation or chronic illness/disability), but just a few suggestions are:

·      Keep in touch with that loved one who is too ill to leave the house – send them a text, give them a call or, if they’re not contagious and feel up to it, ask if they would like a visitor
·      Ask someone if they need any shopping doing
·      Offer to pick up someone’s prescriptions for them
·      If you’re an employer, rather than discounting someone with a chronic illness or disability for a job, look at ways they could work remotely
·      Offer to lend them a book/game/DVD etc. to keep them entertained
·      If they can’t go clothes shopping but you’re going, why not take videos/pictures or even Face Time them while you’re out so they can shop through you
·      If someone has to cancel at the last minute because they’re not well enough, don’t get angry with them and understand how upset they will be as well



Seven days of isolation may seem a long time, but in the grand scheme of things it will fly by. If you’re not feeling too ill, why not use it as an opportunity to do all those jobs around the house you haven’t had time to do? Or have a movie marathon/binge-watch all those Netflix shows you’ve been waiting to watch. For the majority, before long, they will be back out of the house and those seven days will just be a memory. All I, and the chronic illness community, ask, is that you please remember those who can’t get back out there after seven days. The tweet above from Miranda Hart sums this all up really well.


Do you have experiencing of being housebound for a long period of time? Are you hoping more people might start to understand what it’s like for the disabled/chronically ill? 


Friday, 21 February 2020

Cosy Club Basingstoke Opening - Press Event (AD Gifted)


*I was invited to The Cosy Club Basingstoke VIP Opening Night along with three guests and we were kindly gifted our food and drink for the evening. However, all views, as always, are entirely my own

Last October, I was very kindly invited along to the VIP Opening Night of The Cosy Club in Festival Place, Basingstoke. I had hoped to get this post up a lot earlier than this, but with going into hospital for major surgery soon after, my health ended up having to take priority. I did share some stories over on my Instagram, but I thought I’d do a little post on here as well, so I can talk to you about the evening in a bit more detail. 

When the invitation came through to my emails, I was also offered the opportunity to bring a few friends along too. So, on a fairly rainy Monday evening, my Mum and I went over to Basingstoke and met up with a couple of my blogging friends – Dawn from Dear Mummy Blog and Laura from Loopy Lou Laura. We’ve known each other for quite a few years now, after meeting at a local blogging event, so it’s always nice to see each other and have a catch-up when we can. 

We arrived a little bit early, so waited around outside and watched the hustle and bustle inside the restaurant. Other people started to arrive as well, and soon enough the doors were opened and we were greeted by a couple of lovely ladies in beautiful 1950’s style dresses. They showed us to our table, where we settled down and started having a look through the drinks menu. Being the opening night, it got very busy very quickly, but the staff seemed to have the organisation down to a tee and managed to get everyone in their seats in a matter of minutes. 



After ordering our drinks and being told we would be brought a selection of different foods to taste, we could get up and have a little look around the restaurant. The name ‘Cosy Club’ is certainly very apt, as despite it being quite a large area, every part of it feels warm and cosy. There are different types of seating arrangement depending on what you might fancy – from standard tables to cosy sofas, as well as higher tables with bar stools. 






The d├ęcor is quite eclectic with colourful soft furnishings, old paintings on the walls, bold patterned wallpapers and mixture of beautifully warm lights. There’s a long bar where all the drinks are prepared in front of you and 50’s music plays in the background. All of the staff were dressed for the occasion too, with the women in pretty dresses and the men in waistcoats and flat caps. We all said it felt like we were in some sort of 1950’s speakeasy – it was like being transported back in time. 



Our drinks were soon brought over – there had been plenty to choose from on the menu, whether you wanted something alcoholic or not. I went for a cherry-based mocktail, which was delicious (so good in fact, that I had to have another!) and the others had a St Clements, Virgin Mojito and a Cider. I don’t tend to drink much, so it was really nice to see a good range of soft drinks and mocktails to choose from, rather than just a Coke or Lemonade! 



As we started to sip our drinks, the food began to come out. With it being the opening night, the normal menu wasn’t running. Instead, each table were given a selection of different items to try between us from the Tapas menu, which was a really nice way for us to try a number of different dishes. I was really surprised by the amount of food that kept coming out – our table was soon overflowing with plates and bowls of different dishes! I’m not sure if I can remember all of the different foods we had but they included Garlic Mushrooms on Toasted Ciabatta, Roast Turmeric Cauliflower, Goat’s Cheese and Spinach Croquettes and a Cosy Scotch Egg. My personal favourites were the croquettes and the garlic mushrooms, although everything was delicious!

Looking at the full menu, there seems to be a really good range of options for both adults and children, so there should be something to suit every taste. They offer Brunch until 5pm (I’m eyeing up the pancakes!), a variety of sandwiches, burgers, sharers, larger main meals and, of course, some very tasty looking puddings (Hello Mini Cinnamon Doughnuts!) They also have a kids menu and fairly extensive vegan and gluten-free menus too. 








As well as the day-to-day service, Cosy Club’s also run a number of events. You can have a look at their ‘What’s On’ page to find out about all of the different events, but, for example, this month they are running special events for Galentine’s Day, Valentine’s Day and Pancake Day. They also offer live music some evenings as well, so it’s worth keeping an eye on your local Cosy Club to see what’s coming up.

Something I particularly liked about The Cosy Club was their ‘Free Teas for Those in Need’ scheme. It is run in partnership with Independent Age in a battle to end loneliness in every generation. They encourage those that need it to pop along to The Cosy Club for a free cup of tea every Wednesday between 10am-11am. They hope to inspire local people to come together and chat to new people. Their teams will also be on hand to have a chat, as well as offering cake, board games and somewhere comfortable to relax. As someone who raises awareness of mental health problems, as well as experiencing them (and loneliness) myself, I think it’s a great initiative to help anyone that’s feeling a bit lonely.





We had such a lovely evening catching up and trying out the new Cosy Club in Basingstoke that before we knew it, it was time for us to leave. On our way out, we were each given a Cosy Club mug with some Cosy Club purple socks to take home, which was a nice end to a brilliant evening. We enjoyed ourselves so much, that we were already excitedly chatting about when we could next go back to sample the full menu at The Cosy Club and what a great place it would be to host a South East Bloggers Circle meet-up! I’m really grateful to The Cosy Club for inviting me along to their VIP opening night at Festival Place and am looking forward to going back again as my leg gets better! If you’ve got a Cosy Club near where you live and haven’t already checked it out, I would definitely recommend getting a group together for an evening out – you’ll have to let me know what you think! 


Have you been to The Cosy Club before? Or do you think you’ll be going to your local one after reading this? 

Thursday, 30 January 2020

Femoral Osteotomy - The Operation and Early Recovery

It’s been a while hasn’t it?! I should start by wishing you all a Happy New Year – I hope 2020 will be a good one for you. Sorry it’s been quite a long time since I last updated. As you might have seen in my previous post, back in November I went into hospital for major surgery to my right leg – a Derotational Femoral Osteotomy. And to say things have been difficult would be an understatement! So I thought I would write a post updating you on the actual operation and how things have been since then. 


I had to be up really early on Tuesday 12th November 2019, as my Dad and I needed to get the first train up to London to be at UCLH for 7am. Thankfully at that time in the morning we didn’t have to worry about the traffic, so made it there in plenty of time. In fact, we were too early in the end and had to wait outside the Surgical Reception waiting for it to open! Once I’d been checked in, I was seen by a Doctor, who went through the operation with me and marked my right leg with a big arrow (just to make sure they did the correct one!) I then saw the Anaesthetist to discuss the anaesthetic and pain relief. They would normally give someone having this operation a general anaesthetic and epidural, but because I’m allergic to morphine (and they use this in an epidural), he said they would do a nerve block (and GA) instead. Working out my pain relief options was also a bit tricky because I’m allergic to so many painkillers! But we decided I would have a Fentanyl PCA (Patient Controlled Analgesic – a button I could press so I could deliver my own pain relief) post surgery. After changing into a gown and saying goodbye to my Dad, I was taken down to a small waiting room near the operating theatres. You’re only meant to be kept there for a short while, but someone had got the timings muddled up, so I ended up down there for a few hours – thankfully there was a stream of other patients coming and going for me to talk to! 

At about 1pm, I was taken down to be prepared for theatre. I was feeling pretty shivery, so they put this thing called a ‘Bear Hugger’ over me – it’s like an inflatable blanket that connects to what looks like a hairdryer, which blows warm air inside the blanket at a temperature they can control. It was so cosy – I think I need one at home! The anaesthetist gave me some sedation, although he had to give me a few doses before it had any effect. He was then able to do the nerve block, which meant lots of injections around the top of my right leg. Then came the general anaesthetic and next thing I knew, I was waking up in recovery around five hours later.



Initially, I didn’t feel too bad as I came round. The nerve block was still working, so I could feel very little pain. I was mainly just groggy and tired from the anaesthetic. Once my numbers were looking stable, I was taken up to the Orthopaedic ward. As night progressed to morning, my pain was getting more and more difficult to tolerate, despite the Fentanyl PCA. When the Doctors came round to see me in the morning, I was in tears from the pain, so they said they would get the pain specialists to come and talk to me. Unfortunately though, after seeing the Doctors, things went downhill pretty quickly.



I don’t have many clear memories from Wednesday or Thursday, so most of what I know is from what I’ve been told by medical staff and my family. After seeing the Doctors, I remember just not feeling right. I was shivering and shaking but didn’t really know why, as I definitely wasn’t cold. I was also feeling very ‘out of it’ and couldn’t really communicate with the Doctors and nurses. I think at first, they were concerned that I might be developing sepsis, and so started to follow the protocol for treating that. But then I started having seizures and was drifting in and out of consciousness throughout Wednesday and into Thursday. They did various blood tests and found that a lot of my electrolyte levels (things like potassium, calcium etc.) had plummeted very quickly, which can result in seizures. So I was attached to various drips to try and get them back into a normal range. However, this didn’t seem to make much difference and, on Wednesday night/Thursday morning, my parents were called to tell them the staff had had to do an emergency crash call because of how unwell I was. 


I have vague memories of lots of voices and seeing different faces, but everything feels very disjointed. I could sometimes hear people trying to ask me questions, but I just couldn’t seem to speak or communicate in any way. I remember having an awful headache, pain in my chest, not being able to breathe properly and feeling really scared and confused about what was happening. After the crash call, the Intensive Care Outreach Team were called to come and look after me on the ward because I was too ill for the ward staff to manage. Thankfully with their expertise, they were able to keep me out of the Intensive Care Unit and gradually, the seizures stopped and I started improving. I was sent for a CT scan to check that nothing serious had caused the seizures and that the seizures hadn’t done any damage to my brain, but thankfully that all came back clear.

Once I was a bit more stable, a Neurologist came to see my Dad and me. He had read the detailed notes that staff had kept and, based on their observations and my test results, he told me he thought I had experienced Non-Epileptic Seizures due to a Functional Neurological Disorder. Basically, when your body is under stress, either mental or physical, your brain sort of shuts down as a way of coping. He said that because I was in so much pain from my surgery and was also really unwell from my electrolytes being all over the place, that my body simply couldn’t cope and shut down, which then caused the seizures. It’s something I’ve got to look into further with a referral to a Neuropsychiatrist and I’ve also had to inform the DVLA, who are likely to revoke my license again, which I’m gutted about (but obviously understand). 

I was absolutely covered in bruises on my arms from all the needles I’d had stuck in me while I was so ill, and felt very drained, mentally and physically, as seizures really take it out of you. I was sent for an x-ray to make sure the bones in my leg were all in the right place, especially after having all those seizures, and luckily everything had held well.


Once the Intensive Care team had stabilised me, my Dad started to help me get some nutrition inside me, first by drinking some Ensure drinks and then by spoon-feeding me with things like yogurt and potato. I gradually started to feel a bit better (as much as you can after major surgery) and was able to start sitting up a bit and eating/drinking a bit more. When the Doctors were happy that I was more medically stable, the physiotherapists came round to see me. The first time they saw me, they started by getting me to move my feet. Then they helped me to slowly sit up, put my legs over the side of the bed and stand up while holding onto a walking frame. Just that ‘simple’ task of standing up for a few seconds completely wiped me out and I slept for quite a while afterwards.



I was a bit shocked to start with at how swollen my leg was. I remember when I looked at my leg for the first time; my right thigh was pretty much double the size of my left thigh! There was also quite a lot of bruising, which gradually spread and got worse as the days went on. What with all the bruises on my arms and my right leg looking like it did, I definitely looked like I’d been in some sort of fight (and probably lost!)


One of the best things about the ward I was on at UCLH (apart from the amazing staff and lovely patients that I got talking to!) was the incredible view from our windows. Whenever I’ve been in hospital before, I’ve either not had access to a window at all, or the view has been of something like a car park or another hospital building. But with being so high up (I was on floor ten) and being in the middle of London, we had amazing views of the London skyline. I moved bays halfway through my stay, so from my first bed I could see the London Eye, and from my second bed I had a fantastic view of the BT Tower, which looked really pretty lit up at night. We all joked that people would pay top money to have a view like that of London and we were getting it for free (let’s ignore the fact I was having to recover from very painful major surgery!)



Over the next few days, the physiotherapists kept coming back to see me and we gradually progressed from standing with the frame to walking a few steps, until I could get to the toilet and back. It took me a while to get my head around putting any weight on my bad leg, firstly because it was ridiculously painful (even with lots of pain relief) and secondly, because I was so aware of my leg being completely broken and held together with metalwork that I was scared it would just all come apart underneath me at the slightest bit of movement or weight bearing. The doctors and physiotherapists explained to me though, that weight bearing as pain allows actually helps with recovery of the bones and muscles. Easier said than done when you’re in agony, but I was managing to put a small amount of weight on my toes. After several days of practising walking with the frame, the physiotherapist then started moving me over to using ‘gutter’ crutches (crutches that you lay your whole forearm in – I have injured my wrist and so standard crutches would have made the injury worse). I found the crutches pretty difficult at first because I was so wobbly, but with practise, I was just about managing to get to and from the bathroom.


I spent a week in hospital at UCLH altogether – a bit longer than expected, but with being so unwell after the surgery it took us longer to get me stable and up on my feet. I was discharged at about 6pm on Tuesday 19th November and had to make the journey home from London, which was hard work to say the least! We got a taxi from the hospital, although trying to get into the cab wasn’t easy. They put the ramp down, but it was so steep that we found it a real struggle to get my wheelchair in. We then had to get a train from Waterloo, although with it being quite late it meant the train was fairly quiet thankfully. It felt so good to get home and lay down on the sofa!



Since being home from hospital, things have been difficult. I spent the first few weeks crying a lot of the time. The pain was intense and I find anaesthetics really affect my mental health. I think it was also dawning on me quite how big this operation was and just how difficult the recovery was going to be. I had to give myself blood thinning injections in my stomach once a day to reduce the likelihood of blood clots, which took a while to get my head around, as I’ve never had to inject myself before! It also took a few weeks to chase up physiotherapy, as some paperwork went missing, so I felt a bit lost as well. I had reduced my painkillers massively (thinking it was the right thing), but after ringing the specialist Orthopaedic nurse and being told it was normal to still need a lot of pain relief, I started taking them again, which helped a bit. 


But most of my time has been spent laid out on the sofa sleeping and trying to concentrate on things on the TV. However, within the first week of being home, we noticed I was beginning to develop pressure sores on the backs of my heels. I have pretty fragile skin because of my Ehlers-Danlos Syndrome and have had the start of a pressure sore before, so knew I needed to get on top of them before they got any worse. Luckily my GP surgery were brilliant – as soon as I contacted them, I was seen by a nurse who gave me some dressings to wear while I waited for something more permanent. A Community Nurse then came out to visit me and immediately ordered a selection of pressure cushions for me to sit/lay on. I’ve been using them ever since and my heels have healed up nicely, although I am now starting to have problems with the tips of my toes so might need to get some more advice.



Starting physiotherapy in the community has been hard, although I’m lucky to have a brilliant physio who pushes me a bit, but not too much. To begin with, we were struggling to get my muscles to do much at all, so it’s been a very slow process of doing little exercises at home, along with manual manipulation from the physio regularly. I still can’t move my leg very much but my physio thinks the muscles are getting stronger and it’s a bit easier for her to do some movements with my leg. She’s been a bit concerned that things aren’t moving much, so I now have two appointments a week and I’ve been referred for hydrotherapy. I saw my surgeon recently for an eight-week check-up. He said the bone seems to have started growing but it can take at least nine months for it to fuse back together completely. I’m having a lot of trouble bending my knee and my foot now sticks out to the side, which is causing pain. At some point I may need an operation to my lower leg to straighten things out, but the surgeon said they wouldn’t touch my leg for at least nine months. So for now, it’s just a case of working slowly on my physiotherapy to try and strengthen my muscles and improve the movement. 


I had planned to do more regular updates about this operation, every few weeks to detail how the recovery was going. But I think I underestimated just how much the whole thing would knock me for six! So apologies that this is one big update instead, but I hope you’ve found it interesting (or even helpful, if you’re going through something similar) to hear about. Do let me know if you would be interested in future updates as my recovery progresses, and also when I possibly have the lower leg and other leg operated on as well. And you can always watch my Weekly Vlogs on my YouTube channel to keep up with more regular news about my recovery and life in general.


Have you had a Femoral Osteotomy? Or do you have any questions you would like to ask about my experiences of it?