I'm glad to say your test results are normal...

“I’m glad to say your test results are normal – I hope that reassures you.” This is a phrase that I’ve heard quite often recently, and I guess that most people would expect me to be happy to hear these words. After all, who wants their test results to come back showing an abnormality? Well, actually, I do. And I want to explain why.

 

Unless you’ve been ill with something that you’re struggling to get a diagnosis for, it probably seems like quite a strange concept to hope and pray for an abnormal test result. Most of the time people are wishing for the exact opposite – that their tests come back clear and show that nothing worrying is going on. But for a lot of people, particularly those with chronic illnesses, we are desperate to just get something back that points towards an answer.

 

For the last eighteen months, I’ve been having more problems with my health. I already have Ehlers-Danlos Syndrome and various associated conditions, so I’m no stranger to struggling to get a diagnosis (it took me twenty five years to finally get that diagnosis). I’d hoped that I was past that period of my life when I finally got my EDS diagnosis and started finding out what else was wrong with me. But unfortunately, that doesn’t seem to be the case, and for the last year and a half I’ve developed a whole array of new and interesting symptoms. Recurrent fevers, significant unintentional weight loss, severe night sweats, debilitating fatigue, strange rashes and skin lesions that will stay on my body for weeks at a time, joints that swell, turn red and feel burning hot, bleeding under my skin and changes to my nails to name but a few. This also seemed to coincide with my asthma getting worse. As you can probably tell, it hasn’t been much fun!

 

My GP has done various blood tests and my Rheumatologist has also sent me for tests like an ultrasound of my hands and a Nuclear Medicine Full Body Bone Scan. They suspected I might have something like Rheumatoid Arthritis, Lupus or even cancer. But most of my results have come back completely normal (and the ones that haven’t don’t seem to point to any particular diagnosis). Now, don’t get me wrong, it’s great that I don’t have these things. I keep being told that I don’t have this wrong with me and I don’t have that wrong with me. But what no-one is doing is telling me what is wrong with me!

 

I’ve lost count of how many times I’ve prayed and wished that a test would come back just showing something – anything! And how many times I’ve cried when I’ve had that letter telling me ‘I’m glad to say your test results were all normal. I hope that reassures you.’ Because to be blunt – no, it doesn’t reassure me anymore! For the last eighteen months, my body seems to have been slowly falling apart. I’ve spent more time in bed and on the sofa than I have up and about. I’ve lost so much of my independence – I can’t drive at the moment, I need help to have a shower, I can barely lift my nieces and nephews to give them a cuddle. I’m rarely able to leave the house, and when I manage to push myself to do something (because I need to try and look after my mental health as well) it takes me weeks to recover from it. Most of my time is spent sleeping, resting or feeling too unwell to do either of those things so just attempting to get comfortable. Something isn’t right – no healthy person gets these symptoms and spends their days like this. So to keep being told that there’s nothing wrong doesn’t make me feel reassured at all. It just makes me more frustrated.

 

It's not that I want something to be wrong with me when I hope for an abnormal test result. It’s that I already know something isn’t right with my body because of all of the things I’ve shared above – I just want to know what it is. I want a test to tell me that I’m not going completely mad and that there is something going on inside my body that’s giving me all these symptoms. I want a test to point us towards a diagnosis so that I actually have a name for what’s making me ill. Because, without a diagnosis, I’m currently not able to access any support, any treatment, any management for my symptoms or even any acknowledgement that I’m not well. And without a diagnosis, I have no hope of things getting better.

 

I felt a bit nervous about writing this post, because even after explaining why I want an abnormal test result, I still worry that people won’t understand and will think I’m just strange. But I wanted to share it because I know I’m not the only one to be going through this. So many people are in (or have been in) a similar boat, and it can be a really lonely boat to be in. Most medical professionals don’t seem to understand that getting normal tests back isn’t making us feel any better, so there’s no support from them to help us deal with not having a diagnosis. And healthy people don’t tend to understand either, so we can’t really talk to friends and family. So I wanted to share my experiences in the hope it will help others to feel less alone in what they’re going through, and to reassure you that it’s perfectly normal to want those answers. I can’t imagine anyone going through this would not want to know why. So please don’t beat yourself up for getting sad and frustrated about normal test results, even if no-one around you understands you. You’re not alone in this journey, and all I can say is keep fighting. I know from experience how important it is to listen to your gut, and if your body is trying to show you that something isn’t right, then chances are something isn’t right. I just hope that, one day soon, we will all get to those answers so we can get on with treating or managing our conditions and start living our lives again.

Is this something you can relate to? Are you currently trying to get a diagnosis and just keep getting normal test results back?

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Getting the Covid-19 Vaccine - My experience as a Disabled and Chronically Ill Person

I’ve debated writing this post for a few weeks now, as I know there are so many different thoughts and feelings around the vaccination process. But I thought it might be helpful to share my personal experiences of getting the Covid-19 vaccine. I know before I received mine, I was searching online for posts by others in the Disability/Chronic Illness community, but I struggled to find much. So hopefully if someone else is looking for what I was looking for, they might find something helpful in this post. 

 

I want to start by acknowledging a couple of things. Firstly, I know people have different thoughts and feelings about getting this vaccine, particularly in the chronic illness and Disability community. I think it’s completely justified to have concerns about side effects, especially when you already live with medical issues, and so I totally understand that not everyone will feel getting the vaccine is the right thing for them at the moment. This post isn’t here to tell anyone that they should or shouldn’t get the vaccine. Only to share my experiences of the process. It’s not an easy choice to make, so you need to do what’s right for you and your medical condition(s). 

 

The second thing I want to recognise is how difficult it may be to read this post if you are still fighting to be prioritised for a vaccine. So many chronically ill and Disabled people have been left off the list, and it makes me so sad and angry that this is happening. Throughout this pandemic, Disabled people have been treated appallingly – it’s been exhausting and demoralising. And the last thing people need, after being told we are ‘vulnerable', is to have to fight to be protected. It’s something I will continue to campaign for because no-one should be fighting this alone.

 

A bit about my health

If you’re a new reader of my blog, you may not know much about me, so I thought I’d start with a quick rundown of my current health issues and why I should be in a vaccine priority group. I’ve had problems with my health since I was a baby, but things went downhill pretty quickly at the age of 15. I was originally diagnosed with ME/CFS, but this never seemed to really explain all of my symptoms. Ten years later, I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Intestinal Dysmotility, Bladder Dysfunction and Mast Cell Activation Syndrome (MCAS). I also have a diagnosis of Asthma (as well as Depression, and am currently on the waiting list to be assessed for Autism). It’s difficult to know whether I do have ME/CFS alongside these things – some Doctors think I do, while other Doctors aren’t so sure. All I know is, I really struggle with chronic fatigue and various other symptoms that could be explained by an ME/CFS diagnosis, and if I catch a virus (which I do pretty often!) it can really set me back and take a long time to recover from (if I recover completely at all). 

 

I didn’t receive a Shielding letter when we first went into Lockdown, as my asthma isn’t severe enough and my other conditions didn’t fit the criteria. I made the choice to Shield however, as I know how much a virus or infection can set me back. But because of this, I knew I wouldn’t be in priority Group 4 for the vaccine rollout, so I really hoped I would be in Group 6. But when news started to break that most people with moderate asthma wouldn’t be given priority for a vaccine, I started to panic. None of my other conditions were mentioned in the priority documents – ME/CFS should place you in Group 6, but I had no idea whether that diagnosis was still on my medical records, and was pretty certain my other conditions wouldn’t automatically put me in a priority group. I’m on a Symbicort inhaler as a SMART regime for my asthma, as well as Montelukast – neither of which seemed to place me in Group 6 from what I was reading. 

 

The process of getting an appointment

At the beginning of February, I received a text message from my Doctors Surgery, telling me I was now eligible to book my Covid-19 vaccine and to follow the link in the message. I was pretty shocked at first, as I’d honestly thought I would have to fight to be put in Group 6 (like I’ve had to fight for so many other things regarding my health over the years!) But when I accessed the link, it took me to a webpage saying there were no appointments and that I should keep trying. Over the next week or so, I tried the link twice a day (morning and just after lunch, when I thought appointments were most likely to be released), but still no luck. Then the last time I tried the link, it told me that the link was no longer valid and that I would be contacted again when they could offer me an appointment. So near, yet so far!

 

So I waited, and waited, but I heard nothing. After the relief I felt when I received the original text, I was now getting more and more anxious that they’d sent it to me by mistake and that I wasn’t in fact in Group 6 at all. The news was breaking that people with moderate asthma were being removed from the priority groups, and Disabled and chronically ill friends all around me were struggling to get their jabs. I really felt like I was going to be left off the list and would have to wait until my age group was called, despite the fact I have complex chronic health problems.

 

A few people told me I should call my Doctors to ask what was happening, but my Surgery had put out posts on Facebook telling people not to contact them about the vaccine, and they had the same message on their website. They had also closed to anything but urgent problems to try and cope with the vaccination process, so I really felt like I shouldn’t be bothering them when they were obviously snowed under. So I just continued to wait. And as I waited, I started to see post after post on our local Facebook group from people who had received their vaccination and were in Group 6. After waiting a few more weeks and still not hearing anything, I finally decided to just drop my Doctors an email. I thought the worst that could happen would be that it went unanswered, and with news of Lockdown starting to lift, my anxiety was just getting worse so I needed to do something.

 

Within about five minutes of me pressing send, my mobile rang – it was someone from the Doctors saying they’d received my email and wanted to get me booked in as soon as possible, as I should have been able to get an appointment weeks ago. Something had obviously just gone wrong with the link I was sent, but because I thought I couldn’t contact them, we hadn’t been able to get it sorted. The lady booked me in to have my Covid-19 vaccine a couple of days later at my local Doctors Surgery. The overwhelming relief that I felt after hanging up from that phone call was immense. But along with that relief I also felt incredibly guilty. Guilty that I’d been able to get a vaccination appointment when so many Disabled and chronically ill people were still struggling to get theirs. I know I had nothing to feel guilty for, because I was eligible for Group 6 and so should have got that appointment weeks before. And I knew that me having my vaccine wasn’t stopping someone else getting theirs. But the mind is a funny thing and despite me knowing the logic of the situation, I still felt awful that I had got an appointment when so many others couldn’t. And that’s why I will continue to campaign about this, because everyone with a Disability or underlying condition should also be able to access a priority vaccine. You only have to look at the statistics to see how disproportionately Disabled and chronically ill people have been affected.

 

Having the vaccine

My vaccine appointment took place at my local Doctors Surgery, about five minutes from our house, which I was so grateful for. I was a bit concerned I might have to go to a larger vaccine hub further away (it wouldn’t have been the end of the world, but I wasn’t keen on being around a lot more people and having to use my energy to travel a further distance). But thankfully my Doctors were vaccinating those with underlying conditions locally.

 

On the afternoon of my appointment, my Dad drove me the five minutes down the road – we parked in the designated parking in the supermarket next door, got me into my wheelchair and I put my mask on. The short route to the vaccination centre was lined with friendly volunteers in high-vis jackets – there to help anyone that didn’t know the way or who just needed to see a friendly face. I think I spoke to more people on that trip than I have all year! My Dad accompanied me until I was outside the Surgery, as I was feeling a bit anxious and just wanted a bit of moral support. He then headed back to the car and I was met by another volunteer who asked me a few initial questions. I can’t remember exactly what they asked, but it was something along the lines of asking my name, checking I didn’t have Covid symptoms, taking my temperature and giving me some hand gel. 

 

I was then escorted through the exit (as the Disabled access was better that way) and straight into one of the consulting rooms, where I was met by a Doctor and a Nurse. They introduced themselves and explained that the Doctor would be giving me the vaccination and that the Nurse was doing the admin side of things. I was then asked several more questions, including was I feeling well in myself, did I have any allergies, had I had a positive Covid test recently and did I have any questions of my own. I explained very briefly about my medical history and said that I felt as well as I normally do! And I also let them know I have Mast Cell Activation Syndrome (MCAS), which causes me to have random allergic reactions to anything and everything! This was the thing that concerned me most, as I was worried they either wouldn’t give me the vaccination at all, or that I might have to contact other Doctors to be given to go-ahead.

 

I don’t think the Doctor had heard of MCAS, so I had to give a bit of an explanation about what it is and how it affects me. He then asked if I had ever needed to use an Epipen for a reaction, or if I had even needed to be resuscitated because of a reaction (which I answered no to both questions). He then reassured me that he wasn’t too concerned about which vaccine he gave me, and that I would be asked to stay for 15 minutes afterwards anyway, so if I did start to feel unwell they could deal with it then. 

Once we’d chatted through all these things, it was time for them to give me the vaccine. I was given the Pfizer vaccine, which surprised me a little bit, as the AstraZeneca is usually preferred if someone has issues with allergies. But I think because I’ve never needed an Epipen, they were a bit more relaxed with which one they chose to give me. Having the actual injection didn’t bother me particularly, as I’ve had so many injections and blood tests over the years! Some people have said they didn’t feel the injection going in, but I personally did, although it only lasted a few seconds. I was then given my card telling me which vaccination I had received, the batch number and the date, as well as some paperwork about ingredients, side effects and so on.

 

After having my vaccine, I was then directed to wait in the waiting room (or departure lounge as they called it!) for 15 minutes. There was a digital clock on a TV screen, and the time I could leave was written on my paperwork. The only thing I noticed as I sat and waited was that I had started to feel quite dizzy and hot, but this could be completely unrelated to the vaccine. After my 15 minutes were up, I left the Surgery, went back to meet my Dad and he drove me home.

 

Side Effects

By this point, I was feeling pretty tired (not vaccine related, just my ‘normal’ chronic fatigue), so when I got home I lay on the sofa and fell asleep for quite a while. When I woke up, I noticed I was still feeling quite dizzy, especially when I sat or stood up. As the evening went on, the dizziness continued and my arm started to hurt more. I also generally just started to feel a bit worse in myself than I normally do – nothing specific, just generally feeling like I was run down.

 

That night, I slept through the whole night without waking, which is pretty unusual for me (usually I will at least wake up once to go to the loo!) I woke up quite late and still just felt absolutely exhausted. Now, this isn’t unusual for me, as I do struggle with chronic fatigue, but this felt like more than that. The best way that I can describe how I felt is how you feel when you’re coming down with the flu. Every single joint in my body hurt – even my fingers and toes were painful to move, I had a headache, felt shivery (I didn’t have a temperature, but felt like I did), had a lot of pain in my tummy and back (it kind of felt like it does when I have a kidney infection), felt really sick and dizzy and just unbelievably tired. The arm I had the injection in was also really sore – I found it hard to lift it or do much with it because of the pain. I also seemed to develop earache, which I thought was a bit random! 

It’s always difficult to distinguish side effects of a medication/vaccine when you’re chronically ill, as a lot of these symptoms are ones I get as a result of my chronic illnesses. But as these all came on together soon after having the vaccine, it feels safe to assume that they were probably vaccine side effects. I take regular pain medications, including Paracetamol, but if I didn’t, I would have definitely taken Paracetamol to try and help with the side effects. It did seem to help the headache and muscle/joint pains a bit, although they were definitely still very much there! 

 

On the first day, I made the mistake of trying to do some editing at my computer. I really needed to get a video finished and thought I could just push through the symptoms like I often try to do with my chronic illness symptoms. But in retrospect, I think I would have been much better off spending the whole day taking it easy. After struggling to sit upright and concentrate (my brain felt really foggy – even more so than it normally does), I was just feeling increasingly unwell, so eventually listened to my body and fell asleep on the sofa for most of the afternoon. It was definitely what my body needed at that point. That night I didn’t sleep so well and kept waking up in pain (both from the injection site and just general joint and muscle pains).

 

On Day Two, I didn’t feel a whole lot better, so I decided from the outset to just rest and actually listen to my body. I continued to find the regular Paracetamol helpful and slept on and off throughout the day. Most of the symptoms were still there, although as the day went on, the joint and muscle pain did seem to lessen a little bit. Over the next few days, I found that the symptoms gradually started to reduce. It didn’t happen particularly quickly (I hadn’t expected it to) but I did seem to feel noticeably less awful with the side effects each day (although chronic illness symptoms were still making me feel rubbish!) I’d say it took a good few weeks though before I felt like I was back to my ‘normal’ level of chronic illness symptoms. The side effects that seemed to persist the most were dizziness, brain fog, utter exhaustion and just feeling generally run down. I also noticed my POTS symptoms like palpitations and feeling faint seemed to flare up – whether this was related to the vaccine I don’t know, but it did happen in the weeks after having it. I think I’m back to ‘normal’ now – it’s hard to tell when you’re chronically ill, as I’m always getting flare-ups and random symptoms, but I’d say it pretty much feels like what I’m used to my health doing now.

 

My thoughts a few weeks on

For me personally, I’m happy that I’ve received my first vaccine and will be going back for my second one. When news of the vaccines first came out, I’ll admit that I debated whether I wanted to have one at this point in time. I had concerns about a few things, but after doing some research and speaking to medical professionals, I decided that being vaccinated was the right thing for me. As I said at the beginning of this post, I’m not here to try and convince you to have (or not have) the vaccine. That’s a decision individuals need to make for themselves, but I would encourage you to talk to a medical professional if you have any questions or concerns about being vaccinated. With this post, I just wanted to share my experiences as someone with complex chronic health problems, in case they can help someone else who is waiting to be vaccinated. 

 

I had anticipated getting side effects (I do with pretty much any medication or vaccination I have!) so it wasn’t a shock when I felt unwell afterwards. And actually, in my case, I was pleasantly surprised that I didn’t feel as ill as I thought I would. Perhaps that’s partly because I’m used to having periods of being quite unwell, so I was prepared to feel worse than I did. But I know the side effects vary so much from person to person, so it can be difficult to know how to prepare when you have no idea how badly you might be affected. My personal strategy was to prepare to experience severe side effects – that way, I felt ready to manage if I got really unwell and anything better than that was a bonus. And I just kept reminding myself that however unwell I was feeling from the vaccine, it would be so much worse if I actually had Covid. I’ve seen loved ones fight Covid and know how unwell some of them have been, so for me, the side effects were worth it if it gives me some protection from being as ill as these loved ones were.

If you have an underlying condition and are still struggling to be prioritised for a vaccine, the following letter templates, which can be sent to your GP, and petition, may be of some help:

 

The ME Association GP Letter and CCG Letter Templates

 

Contact GP Letter Template for Carers

 

Asthma UK Petition for vaccine priority

Have you had your vaccine yet or are you still waiting? If you have any other questions that I haven’t answered, please let me know

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Coping with being Housebound

It’s been quite a while since I last updated my blog. I don’t really have any excuses – I thought I would have more time to do things at the moment, but for some reason I’m finding I seem to be getting less done. It’s frustrating because I have so many blog post ideas and things I want to share with you here, but my body would rather just sleep instead! However, by some miracle I’ve finally managed to get a blog post written! 

I thought today, I would share with you some ways to cope with being housebound. On the 23^rd March, we were told to ‘Stay at Home’ and to only leave the house for a few specific reasons. As well as this general guidance, those with certain medical conditions received letters telling them to shield themselves (i.e. not to leave the house at all) for at least twelve weeks. And alongside those that received letters to shield, there are thousands more who are having to isolate, either because they have symptoms of the virus, or because they have other health conditions that aren’t on the shielding list but that still put them in a vulnerable position. That’s a lot of people having to stay at home – many of who are probably used to going out every day. 

Although I didn’t receive a shielding letter, I have chosen to isolate as much as possible because I have complex chronic health problems and know how vulnerable I am to a simple cold or virus. But being housebound isn’t a new thing for me. In fact, I’ve spent over half my life ‘training’ for this moment! I became ill at the age of 15 and was originally diagnosed with M.E/CFS. Years later, I finally received the diagnoses of Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Intestinal Dysmotility, Bladder Dysfunction, Mast Cell Activation Syndrome, Asthma and a few other random things. 

Since the age of 15, I have spent a lot of my time being either completely housebound, or only able to leave the house for medical appointments and the odd ‘nice’ thing. It can be a pretty tough and lonely existence, especially when there’s no end in sight of it ever getting any better. Over the years, I think I’ve learnt to adapt to some extent, and although I wouldn’t say it gets any easier, you develop coping strategies and your focus changes to allow you to manage a life that you could never have imagined living. 

Obviously this lockdown isn’t quite the same. The vast majority of people having to stay at home aren’t doing so because they’re too unwell to leave the house (although some are). This in itself opens up possibilities that aren’t available to people with chronic illnesses. But I do think people are getting a glimpse into what life can be like with a chronic illness. The isolation, the disappointment of seeing plans cancelled, the uncertainty over money and careers and not knowing when it will all end. It’s difficult for anyone to know how to cope with. So I thought I would share a few things that have helped me over the years of being housebound, in the hope they may help other people to cope too (both during lockdown and beyond). These tips are likely to vary in usefulness depending on your level of health and why you’re isolating (i.e. if you’ve got symptoms or a chronic illness, you may not feel well enough to do all of these, whereas if you feel well in yourself, you may find more of these helpful). But hopefully there will be something for everyone here.

Stick to a routine

When I first became housebound, my routine went out of the window. I was sleeping a lot more, I was staying in my pyjamas all day and I wasn’t following regular mealtimes. This was partly down to being unwell, but also because I knew I wasn’t leaving the house, so I didn’t feel like it really mattered. But as time has progressed, I’ve realised just how important some sort of routine is for my mental health. Your routine is likely to have been flipped on its head with this lockdown. So it’s important to find a new routine that works for you. How strict and busy you make it is completely down to you, and if all it consists of is changing into some day pyjamas and making sure you eat regularly, then that’s fine. But it’s amazing how a bit of routine every day just helps to give you purpose and to keep you going.

Netflix Party

This tip is something I haven’t yet tried and that has only become available fairly recently. But if you enjoy watching films or programmes with friends and family that you’re not currently living with, this is a great way to still be able to do it. Netflix Party synchronizes video playback and adds a group chat to your favourite Netflix shows so you can watch them at the same time as friends and family, and talk about them as you watch. 

Group Video Calls

I’ve never really made use of video calls much before, let alone using group video calls! I’ve always found phone calls quite difficult with my anxiety, but since starting to use video calls, I’ve found I can cope with them a lot better (possibly because I find it easier to be able to see someone’s face when I’m talking to them). Now this is probably showing my level of technological understanding, but until this lockdown, I didn’t realise it was possible to have group video calls (I guess it’s just something I’ve never had to use!) But I’ve now been introduced to Zoom (and group chats on FaceTime) and am realising just how important they are in allowing us to keep up with our social contact. 

We have quite a big family, so it’s lovely to be able to have everyone chatting on one screen, and it also makes family birthdays during lockdown a little bit easier. I also run a mental health support group, which usually meets once a month. Obviously this has had to stop, but people still need mental health support, now more than ever. So I have been running weekly group meetings on Zoom, which has been great. I’d really recommend looking into group video calls if you haven’t already, as they are so useful for socialising with friends, family, work colleagues and support groups. 

Make a list of things you want to get done

So as I said, not all of these tips will apply to everyone, and this one in particular may not be useful if you’ve been housebound for a long time due to chronic illness, or if you’re housebound with symptoms of the virus. But if you’re at home at the moment and are feeling well, it might be helpful to make a list of all those jobs you’ve been meaning to get done for ages but have never had the time. Although I’ve been isolated for a number of years, I do have a little list on my phone of tasks I would like to achieve. It just gives me a focus and a reason to get up some days, but I don’t have a time limit on those jobs – it’s just a case of doing bits when I feel well enough. 

Although this is a great time to get things done around the house and garden, it’s also important to remember that you don’t have to be productive all the time. Our emotions and mental health are all over the place right now, so if all you feel like doing is binge-watching something on Netflix or Disney Plus, then that’s fine. Your ‘To Do’ list could include a mixture of productive tasks and things to do just for you (like reading, gaming, crafting or anything else). 

Do some crafting

This will depend very much on whether crafting is your kind of thing, so if it isn’t, then this tip isn’t for you! But if, like me, you enjoy doing crafts but never seem to have the time to do anything, perhaps try and make a bit of space in your day for getting back to what you enjoy. For example, I’ve been trying to put together a Project Life Scrapbook for the last few years, but just haven’t had the time to keep up with it. So while I haven’t got so many medical appointments and other commitments, I would really like to try and set aside a bit of time to just enjoy creating my scrapbook again. If you’ve never really done any crafts before but have always fancied giving something a go, now is as good a time as any to try something out! You don’t necessarily have to buy new materials. Ask around in your community to see if someone has any spare that they could give you. Or start with something as simple as colouring or painting – there are so many resources online to get you started with any craft project that takes your fancy.

Do a jigsaw

This is another one that will depend on what sorts of things you like doing, but if you haven’t done a puzzle since you were a child, why not give it a go? It’s surprising how good they are at distracting you from difficult thoughts, and before you know it, an hour has gone by and you’re still trying to fit the pieces together! I like the fact that, with a jigsaw, you don’t have to do the whole thing at once. You can keep coming back to it and just doing a few pieces at a time if that’s what works for you. There are so many different puzzles to try with all sorts of pictures and varying amounts of pieces. I am particularly fond of a Disney puzzle, but there really is something for everyone!

Make or find an upbeat Spotify playlist

I don’t know about you, but I find music can really help when I’m feeling down or anxious (and isolation and the current situation is enough to make anyone feel those things). Sometimes, if I’m really struggling, all I can find the energy to do is put on my favourite song and have a little sing (or dance!) along to it. So why not try putting your own playlist together? You could even have different playlists for different moods (because sometimes we all just need to wallow and cry, listening to sad songs). If you don’t fancy making your own, there are plenty to choose from on Spotify. One of my particular favourites at the moment is blogger, Beth Sandland’s, Social Distancing Kitchen Party Playlist. It’s full of throwback tunes that are sure to get you having a boogie in the middle of your kitchen!

Pamper yourself

I don’t think it should take a global pandemic for us to factor in a bit of self-care and pampering, but it’s a good opportunity to start if you don’t do it already. You might think because you’re at home all day that you don’t need to set aside specific times for relaxation and winding down, but it’s just as important to do it now than it was when you were out all day working and socialising. Setting aside time just for looking after yourself means you are telling your mind that you deserve those acts of self-care. How you pamper is up to you and what you enjoy most. You could use that face mask or bubble bath you’ve been saving for a special occasion, paint your nails, do some meditation, read a book or anything else that is ‘just for you’ and helps you to feel relaxed. 

Write some letters

Something that has helped me massively since becoming unwell (and therefore becoming a lot more isolated) is writing penpal letters. I started when I first became ill, as a charity I was put in touch with for young people with M.E. had a penpal scheme, and I’ve been writing to penpals ever since. When you’ve been at home for days, weeks or months on end, one of the highlights of your day becomes what the postman delivers through your letterbox! So instead of just getting bills or medical letters, it’s really nice to receive handwritten letters and cards from friends all around the world. These pieces of snail mail have honestly kept me going at some of the hardest times in my life. I found my penpals in all kinds of places – charities for people with the same conditions as me, Facebook support groups, Instagram and also friends that have moved away. But during this lockdown, why not start by just writing to people you know but can’t currently see in person?

Work on your blog and YouTube

Again, this one only works if you have a blog or YouTube channel (or would like to make one!) But one of the biggest reasons that I chose to start blogging was because of my chronic health problems. I have always enjoyed writing and being creative, but when I became ill they became so much more than just a hobby. They gave me an outlet to express my creativity when I struggled to do much else. They allowed me to communicate some of what I was going through, and they introduced me to a huge community of other content creators, which helped me feel a bit less alone. I’m not well enough to work a traditional 9-5 job, but having a blog and YouTube channel offer me something to help structure my days and give me a feeling of achievement. So if you’ve always fancied having a blog or making YouTube videos, why not give it a try?

Exercise your brain as well as your body

Throughout the lockdown so far, I have seen so much emphasis being put on exercise. And that’s great – it’s really important to keep your body moving as much as you can. For some, that will mean taking part in home workouts, going running or cycling or setting up a home gym. While for others, such as those with chronic illnesses, it may be as ‘simple’ as doing gentle stretches or basic physiotherapy exercises. There is no one size fits all, so don’t feel bad if your exercise doesn’t look like someone else’s. But as well as keeping your body moving, it’s also really helpful to keep exercising your brain while you’re housebound. I struggle with brain fog anyway, but definitely find my mind seems to stop working quite so well when I’m spending a lot of time at home. Like with exercise, keeping your mind working will also look very different for different people. Some may enjoy things like puzzles and crosswords, while others might play computer games, do colour-by-numbers or listen to audiobooks and podcasts. It’s about finding something that works for you and that you can manage.

Talk about your feelings

Being housebound, for whatever reason, is tough. If you’re chronically ill and/or disabled, those things bring their own complications and worries. Or if you’re usually healthy and are suddenly experiencing the need to isolate, you will probably be dealing with a whole range of different feelings. My biggest piece of advice would be to make sure you are talking about those feelings. That could be talking to the people you’re living with, talking to friends/family online, using virtual support groups or, if you feel you need a bit more than a friendly ear, getting in touch with your GP or a helpline like The Samaritans. There is no shame in finding things hard, so please don’t feel like you have to keep everything to yourself. I’ve learnt the hard way that bottling things up can end in disaster, so please just talk, talk and talk some more.

Look for ways to help others

The final thing that really helps me to cope with being housebound is looking for ways that I can help other people. I have always wanted a career that involves helping others – being a doctor, a play therapist, an Occupational Therapist or working in the police. And I find it really hard some days that I can’t do these things. Being stuck at home, too unwell to do the things I crave, can leave me feeling useless and worthless. And I can imagine, at the moment, that healthy people who have to stay at home may also feel some of these things for not being able to get out there and contribute as they usually would. But just because you’re not on the NHS frontline saving lives or a key worker keeping the country going, it doesn’t mean you can’t still help in some way. If you’re able to leave the house, why not volunteer for your local Covid response, helping to get shopping and medication for people that are shielding? Or if you’re shielding, you could offer to phone people who might be living alone, send postcards to a local nursing home or send a card to a seriously ill child through Postpals. No matter how big or how small, there are always ways to help other people, and doing things like this help my mental health bucket loads when I’m housebound. 

And there we have it – a few things you can do to help you cope with being housebound. I really hope there will be something here for everyone – whether you are housebound through chronic illness, disability or the current situation. I also hope this post shows you that you aren’t alone in what you’re going through either, and that it’s OK to reach out for help if you need it. 

Are you currently housebound or have you been in the past? Were any of these ideas helpful, or are there other things that helped you to cope?

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Rare Disease Day - Living with Ehlers-Danlos Syndrome

The 28^th of February 2019 marks the twelfth international Rare Disease Day coordinated by EURORDIS. It’s a day when hundreds of patient organisations from all over the world hold activities to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 1 in 20 people will live with a rare disease at some point in their life, but despite this, there is no cure for the majority of rare diseases and many go undiagnosed for years or even a lifetime.

So what is a rare disease?

In Europe, a disease or disorder is defined as rare when it affects less than 1 in 2000 people. There are over 6000 rare diseases, which cause patients a huge range of symptoms. These can vary between disorders, but symptoms can also differ between those suffering from the same disease. Misdiagnosis in rare diseases is, unfortunately, common, and this can lead to a delay in treatment and therefore affect a person’s quality of life. And with so few cures available, patients with rare diseases often endure high levels of pain and suffering, alongside their families. This is why awareness and research is so important.

I was born with a rare disease (Hypermobile Ehlers-Danlos Syndrome), but didn’t receive a diagnosis until I was 25. That wait for answers isn’t uncommon and it left me struggling with my mental health as well as my physical health. So today, I thought I would use this opportunity to talk about what it’s like to live with Ehlers-Danlos Syndrome (EDS) in the hope it will help people to understand, to recognise the symptoms and to invest in further research towards treatment and ultimately a cure.

The symptoms of Hypermobile EDS

Hypermobile EDS is thought to be the most common genetic connective tissue disorder, although at the moment there is no up-to-date research that reveals how frequently it occurs. You can either inherit the disease from a parent who has the same faulty gene, or it can be caused by a mutation during conception, meaning no one else in the family has it.

There are a whole host of symptoms and associated conditions that come with Hypermobile EDS, including, but not limited to:

·     Joint Hypermobility

·     Chronic Pain

·     Joint dislocations and subluxations

·     Smooth, stretchy skin

·     Fragile skin that bruises easily

·     Fatigue

·     Digestive problems such as Gastroparesis and Intestinal Dysmotility

·     Postural Orthostatic Tachycardia Syndrome (POTS) – dizziness, fainting, increased heart rate (especially on standing up)

·     Problems with internal organs such as mitral valve prolapse or organ prolapses

·     Problems with the bladder e.g. incontinence or retention

·     Mast Cell Activation Disorder

What’s it like to live with Ehlers-Danlos Syndrome?

I sometimes find it quite difficult to describe what life is like with EDS because I’ve never known any different! I can often forget that some of the things I experience aren’t ‘normal’ – for example, I sometimes forget that it’s not usual to be in constant pain or to spend half your life at hospital appointments!

Growing up, I didn’t know I had Ehlers-Danlos Syndrome, but looking back I can see constant signs of it. As a baby, I needed to be fitted with a Pavlik Harness to stop my hips from dislocating. Thankfully, it’s not something I remember, but I know it made life more difficult for my parents, especially when it came to nappy changes and the fact I couldn’t have a proper bath! As I got older, I was always injuring myself and spent many an evening in A&E with sprains and strains (probably caused by partial dislocations, but I didn’t know that at the time).

It was only when I was 15 though, that my EDS started to have a noticeable affect on my life. And, as I mentioned, it took until I was 25, another ten years, to be given the correct diagnosis. It probably sounds obvious, but life with Ehlers-Danlos Syndrome is hard. I’ll often try to play it down to friends and family because I don’t want to worry them or be known as the person who is always complaining, but having a rare disease (or several!) is incredibly difficult and scary. 

The constant widespread pain and debilitating fatigue is completely draining, and some days I will wake up and wonder how on earth I’m going to make it through another day. Although I now know what is wrong with me, it doesn’t take away how frightening it can be when your body is malfunctioning and there’s very little anyone can do about it. A relatively new symptom to crop up is that I’ve been finding it difficult to swallow. Such a basic function that most people take for granted, but at the moment every mouthful brings with it gagging, coughing and food getting stuck in my throat. And it’s massively anxiety provoking; not quite understanding why something else is going wrong and wondering whether there will be a solution or whether it will be something else that I just need to ‘live with’.

Yes, the actual physical symptoms are tough to live with, especially when there’s no treatment, but it’s the anxiety that comes alongside living with a rare disease that can often go unappreciated by others. People (friends, acquaintances and even medical professionals) often expect me to be used to spending time at medical appointments, in hospital and having tests, so it can be hard for them to understand that, just because I’ve been doing those things for a long time, it doesn’t make them any less scary! I’ve had people say to me, “Oh, I thought you’d be used to having blood tests by now?!” And yes, I am ‘used’ to it in the sense that I’ve lost count of the amount I’ve had. But being used to having to do something regularly doesn’t mean I don’t still get anxious about it! And it doesn’t stop these tests and procedures from hurting and making me feel unwell.

Living with a rare disease like Ehlers-Danlos Syndrome is also incredibly frustrating for a number of reasons. For example, I have a brain that doesn’t quite realise that my body doesn’t work properly! So I have all these thoughts, hopes and dreams of doing all sorts of amazing things, but my body just won’t keep up! I try not to discount things that I want to do straight away, because with a lot of things there is a way around my disabilities. But there are dreams I’ve had to give up on, such as becoming a Doctor, simply because my health isn’t good enough. And that really sucks! 

It’s also incredibly frustrating to have a disease that has very little treatment and no cure. I’ve had to lower my expectations dramatically from when I first got really unwell. At the age of 15, when my health began to fail, I would go to the doctors with the expectation of getting a diagnosis and some treatment to eventually feel better. But over the years, and since getting my EDS diagnosis, I’ve had to adjust my expectations of what the medical profession can do for me. I now know that I have a condition (and associated conditions) that are not well understood and have very few treatment options. I know that generally, when I go and see a doctor for a specific set of symptoms, the response is more than likely going to be that it’s something I will have to learn to live with and manage. I’m very much the kind of person who likes to fix something if it’s not working, so having a body that doesn’t work in that way is challenging to say the least!

Alongside this, living with a rare disease can feel incredibly lonely. If you have a fairly common chronic condition, the likelihood is that there will be a specific department at your local hospital that treats/manages this condition. There will be consultants who specialise in it, specialist nurses that you can contact if you need advice and possibly a local support group so you can talk to others going through similar problems. But for rare diseases, most of these things just don’t exist. I’ve been passed from pillar to post around my local hospital as doctors have tried to work out who would be best to look after me. These days, I usually end up being referred to specialists up in London (which is exhausting in it’s own right, although I am grateful to have their input) but even they don’t usually specialise in my particular disease – they tend to focus on a specific symptom/set of symptoms but not necessarily related to Ehlers-Danlos Syndrome. I don’t have any kind of specialist nurse as my first point of contact if things get worse or I need some help. And if I try to ring my local surgery or a secretary of one of my consultants, they are often at a loss of what to do with me because they don’t have knowledge of my rare disease. 

Thankfully there is a charity, EDS UK, who do all that they can for people with EDS – without them, it would be an even lonelier existence. I’ve reached out to them before when I’ve needed support or advice and I often read their latest research and attempts to make life better for people with EDS. They also run local support groups both on Facebook and in person, and so this does help to break to isolation that a rare disease can bring. I’ve lost a lot of friends over the years because of my illnesses – either they’ve drifted away because I can’t do the things they want to do or they haven’t understood my conditions – and it’s heart breaking. And it’s not that easy to make new friends because my poor health makes it difficult to get out and about as much as I’d like. I’m a naturally sociable person, so to be in a position where I have so little social contact has a massive affect on my mental health.

So as you can probably see, life with a rare disease is complicated. I did consider basing this post around the individual symptoms that I experience as part of my EDS and how they affect my daily life, but decided I wanted to speak about life with EDS more generally. However, if you would be interested to hear more about the symptoms I experience and ways I try and manage them, I would be happy to do another post around those issues, so do let me know.

My hope is that, with this post, I will help to raise awareness of rare diseases, Ehlers-Danlos Syndrome and what life is like when you have something ‘different’. In the future I would love to see more being done for the 1 in 20 of us who will have a rare disease at some point in our life. Whether that’s research into treatments and cures or just more support on offer to help people live with these often-incurable conditions. I hope that one day, having a rare disease won’t be such a lonely experience and that, one day, people won’t have to fight for years just to be listened to and to receive a diagnosis.

Do you have a rare disease? Or can you relate to anything I’ve spoken about in this post?

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