I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.
Hyperbole and a Half – Allie Brosh
The Truth Pixie – Matt Haig
Living With the Enemy – Ray Owen
The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
Miranda’s Daily Dose of Such Fun – Miranda Hart
Five Feet Apart
Brain on Fire
We Are Visible
This Is Not What I Ordered
Chronic But Ironic
Feminists Don’t Wear Pink (Scarlett Curtis)
Shagged, Married, Annoyed (Rosie and Chris Ramsay)
Amy’s Life/Amy Lee Fisher
Life With Stripes
Health Care Esstentials
Dry shampoo (Batiste or Colab Dry Shampoo)
Body Shop Almond Milk Body Yogurt
Au Lait | Scottish Fine Soaps – Body Butter
Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
Amie Petal Perfect – Cleansing Micellar Water
Snug as a Bug
Hot water bottle
A good pillow (I have a V pillow and a memory foam pillow)
Odds and Sods
Large medication box
A support system (friends, family, health care professionals, people who just get it)
Technology to keep connected to the outside world
A bag – fashionable but sensible. Mine is similar to this
Mobility aids (crutches, wheelchair, cane, walkers etc)
NB – If you aren’t familiar with the Spoonie Theory, click here
I found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.
Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain.
That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational.
That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try.
So how did I survive lockdown without relapsing and becoming very unwell?
Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad.
On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere.
Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.
Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.
As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.
I am single. Happily single most of the time, however that’s not to say that I don’t date and I haven’t been in relationships. I do date and I have been in relationships, just right now, I am single, a cat lady and I love to starfish in my bed.
If you had asked me as a teenager, I should be married by now and well on the way to the 2.4 children that is the average. Life had different ideas for me and I feel mixed about that. It’s not that I don’t want a relationship: I have profiles on two online dating apps and I have been speed dating (that was an experience in itself!) but I am aware that I come with additional baggage and that can be a lot for someone else to take on. There are days when it feels like I haven’t come to terms with having long term illnesses, so how can I expect someone else to take that on as well?
Honestly, my experiences of dating with a chronic illness have been mixed. Trying to decide when to tell someone about the various chronic illnesses that I have is hard. Telling them too soon and they are likely to freak out, tell them too late and they are likely to be annoyed that you didn’t say something sooner.
I had a pretty bad experience with someone I met through an online dating app, I made the decision not to say anything about my health but I constantly felt like I was deceiving him. Things were going really well, but it got to the point that I had to tell him that I wasn’t well. I had just been offered my dream job but had to turn it down due to worsening health issues and obviously he asked questions about why I wasn’t in work. I explained that I had long term health conditions and because of that, I was in hospital a lot and not able to currently work. In an instant, it was clear that he had lost interest but also very clear that he didn’t really understand when he said “but you look fine?” Date night came to a rapid end and I never heard from him again. I’m not going to pretend that I was heartbroken, I wasn’t, but I was hurt, mainly because I expected better than that reaction. I had hoped that given he had got to know the “real” me, he wouldn’t be completely freaked out by what I said. How wrong I was. It hurt because it made me feel unloveable, a feeling that I have now experienced one too many times.
Learning from that experience, I decided to be honest earlier on in getting to know someone. And that didn’t go well either. I tend to start with the caveat similar to “this is a lot to take on, so I’m telling you now so that you have the choice to leave before we get to know each other better.” I don’t know if it’s the right thing to say, but it’s kind of giving them permission to run away and not feel like a dick about it. I get hurt, but hey, at least I’ve spared their feelings! On one occasion, I was asked numerous questions and felt like I was being interrogated. Then there was the radio silence, never to be heard from again. On another occasion I was told that it wasn’t going to work because he didn’t want to be with someone who would break during sex. For clarity, I do not “break” during sex. Another time, they had the decency to carry on talking to me for about ten minutes before disappearing into the abyss, never to be heard from again.
And I get it. It is a lot to take on. Quite often people can’t see beyond the illness or understand that if you take away all the health conditions, I am still a normal woman in her twenties, eventually wanting to settle down and think about having a family. Whilst I might joke and say that they weren’t the one, that doesn’t take away the hurt. It doesn’t take away from the fact that I feel undeserving of love because it’s too much for someone else to take on. It doesn’t take away from the fact that being loved for how I am is too much for the majority of people to take on. So yet again, I am left with having to pick myself up. I leave it for a while before dipping my toe back into dating, telling myself that this time, it will be different. I’m yet to have an experience that is different. I’m yet to meet someone who is fine with the fact that I’m a bit wonky and my body does weird things, but is prepared to love me for that. As well as feeling unloveable, I feel faulty. Like, can I return to sender and get a working body please? One that doesn’t freak people out.
Who knows, maybe in a year from now, I’ll look back at this blog post and smile because I am happy and in a relationship. Or I might still be psyching myself up to dip my toe back into the dating pond.
I don’t think there is a clear cut answer on how to address chronic illnesses when it comes to dating. I’m sure there are good people out there who understand, I’m just yet to find them.
I recently wrote a post about how to support someone with depression. It made me realise that talking about how to support someone with chronic illnesses would be worth touching upon too. It can be really hard to grasp the reality of not ever getting better, unless you’ve actually gone through it. And very often, being hit with cliched platitudes can leave us feeling worse. It’s really important to note that illness and pain are not character defects or signs of weakness. People living with autoimmune or other chronic illnesses are proof that the human body is a fallible system. Life is imperfect and our bodies are too. So below are some tips on how to support people with chronic illnesses.
Believe them. So often, people with chronic illnesses, especially if they are invisible, are told that it’s all in their head and spend years fighting for validity and a diagnosis. A lot of the time, a person might look okay, but that doesn’t change the fact that they could be in a lot of pain and it definitely does not mean that they are suddenly cured. People frequently have to put on a brave face and that might include a full face of makeup and being up and dressed. Some chronic illnesses are rare, meaning that doctors don’t always have the specialist knowledge around conditions and patients become the experts. Unfortunately, instead of admitting that they aren’t always knowledgeable, doctors can become dismissive Patients are branded as being dramatic at best and hypochondriacs at worst. Symptoms are brushed aside as being psychosomatic and it isn’t uncommon to be silenced with anti-depressant medications.
Listen to what they’ve got to say and actually hear them. Asking how a person is can make such a huge difference because it shows acknowledge of their condition. They might not always answer honestly, often saying “I’m fine” is a lot easier than saying “I’m fed up, I’m in a lot of pain, being awake is painful and I just want to go back to bed and hide from reality” but in asking, you’re opening the door and allowing that conversation to take place. It’s really easy to not be an idiot and inconsiderate. Reaching out to someone is easy, but be genuine about it. Remember that you are not their therapist and don’t try to be one. Chronic and mental illnesses often do go hand in hand so don’t blur the boundaries between friendship and therapy. Constant and repetitive talking isn’t always needed, follow their guidance and know what is best for them.
Find out more about their illnesses. When I first became ill, it meant the world to me when a friend said “I’m going to research more about xyz” because it showed they cared. You’re not going to have all the answers and you don’t have to become an expert, but understanding that pain isn’t going go away and having an idea about what is faced in day to day life means that people feel less isolated and alone. Don’t pretend that the illness isn’t there: it is very prevalent is their lives and it isn’t going to go away if you ignore it.
Don’t give up on them or abandon them when times are tough. Constantly feeling unwell can turn people into a bit of a bitch. Think about having flu all the time combined with widespread pain, whilst trying to walk through treacle backwards. It can be a really shit situation. Losing friends is an inevitable part of dealing with a chronic illness but that doesn’t make it any easier. Knowing that you’re too complicated to deal with is hard to hear and guess what? People who are chronically ill do not choose that lifestyle. It’s a lot harder for the person unwell than it is for those around them. Pick up the phone, send a text, send a cute card in the post, offer to help in practical ways. Would they like it if you turned up with coffee? Or some snacks to share whilst watching a trashy film? Stamps for letter-writing? If you do bring a little something, make it nice. I think people tend to skimp on gifts for chronically sick people: they aren’t going to get better so it can become expensive over time. Remember, a gift does not have to cost money.
Ask how you can help. But understand that there might not be a simple answer to this. I know from experience that trying to juggle being ill and my life can be really hard and I don’t always have the brain capacity to think about how other people might be able to help me. Use your brain and think about what might be helpful. Would help with a food shop be useful? Think about specific things that might help.
Don’t belittle their experiences or their treatment plans. Different things work for different people. Some people will respond well to traditional medications, whereas other people will lean towards more holistic therapies. And that’s okay. Criticising treatments is pretty toxic and incredibly unhelpful. Everyone gets tired and everyone gets ill from time to time but that is not the same as having a lifelong, enduring, chronic illness. Don’t confuse the two.
When you’re in pain, it feels awful having to let your loved ones down but it feels unbearable to not be believed or to be criticised when you are trying your absolute best. Chronic illnesses form a huge part of people’s lives and it’s understandable that people will talk about them, a lot.
You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.
Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!
Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.
Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.
Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.
Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.
Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.
Make memories. Take photos.
Stand up for yourself.
Find and enjoy whatever it is that makes you happy.
Respect yourself and respect others.
Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.
Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.
Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.
The first week of June marks Volunteers’ Week across the UK, a week to say thank you to volunteers for giving up their time and celebrating work which is done by volunteers. I have been volunteering off and since since I was 15 and I personally think that it is one of the most rewarding things that you can do. You’re able to contribute time and skills to help people, often who are vulnerable, as well as gaining new experiences and opportunities, whilst making a huge difference. Not only that, but at some of the toughest times in my life, I have been able to hold on to the fact that I volunteer: it has given me a purpose and something to focus on when everything seemed impossible hard and has also forced me to think about something other than my wonky body or spiralling mental health. Put simply, I genuinely think that volunteering has saved my life.
As a teenager, I volunteered with Barnardo’s, a children’s charity, before being offered a paid position as a play and support worker. It gave me an escape from the reality of exams, applying to university and instead gave me confidence, new friendships and an escape. It was really tough at times, I was working with disabled children and young people, frequently people who were the same age as me and I was having to do intimate personal care, amongst other things. I very quickly learnt the importance of dignity and putting aside disability and treating service users like “normal” people. Most of my friends worked in retail, but I knew that retail wasn’t the job that I wanted to do. I would go to work and be having to restrain children for their own safety, if they became violent, I would have handfuls of my hair pulled out, I was urinated on and had sperm wiped in my hair (I wish I was joking) and I was dealing with medications and tube feeding and complex health conditions like it was nothing. I wasn’t really sure what I wanted to do with my life, other than being really interested in working with people and this job was my first paddling into the world of supporting young people with additional needs and I loved it.
I stayed in this, now paid, role for six years, working around university and living 200 miles away and gave as many hours as was possible in holidays. It’s only now that I look back, ten years on, do I realise how vital this volunteering position was. When I started, I was deep in the grief process, after losing a friend to suicide. I was struggling with my own health and being bumped around different hospital departments to try and figure out what was happening and I was unhappy at school due to the pressure of exams. My confidence was low but I was welcomed with open arms by a fantastic team of people: little did I know that my initial enquiry about volunteering would see the dark clouds above me start to fade away and bring new light into my life. Not only had I made a difference to people’s lives, I had also made lots of new friends and built my own confidence as well.
Fast forward to September 2018 and I started volunteering with Girl Guiding. In January 2018 I had been offered my dream job, working in children’s social care, but my declining physical health meant that I had to turn it down and instead forge a life on universal credit because I was too ill to work. I sent an enquiry to Girl Guiding to see if there was any volunteering that I could do. Initially this was purely because I was thinking about my CV and was forward planning for when I would be returning to work. The atmosphere in Girl Guiding has made it one of the best places I’ve worked. Everyone is awesome, and I don’t say that lightly. Everybody goes into Girl Guiding with their own story and reasons for volunteering but one thing is certain, you cannot beat the passion and positivity from everyone you meet. The two hours when I was helping to run a Rainbow group (five to seven year old girls) quickly became the highlight of my week. It gave me my smile back when I felt very lost and without a purpose.
My health deteriorated further over 2019 and I had a few months away from volunteering when I was in hospital. I remember being so anxious about returning and potentially having to face difficult questions. But yet again, I was welcomed with open arms and unwavering support. I didn’t face any stigma or discrimination, maybe because the other leaders had their own stuff to contend with too, I don’t know. It makes such a difference working with people who have a shared understanding, there was a mutual respect that we all had stuff going on in our private lives and sometimes we talked about it whilst always focusing on making the sessions as fun as possible for the girls. The diversity of the role means that even if you’re having a bad week, there is still a role for you. You can be sat dealing with the admin side of running a group or be actively playing with the girls and having fun with them.
Without a doubt, choosing to start volunteering as a teenager was one of the best decisions that I could have made. Continuing to volunteer throughout my twenties proved to me such a strong protective factor in my life that I now can’t imagine my life without volunteering in some respect. So whilst volunteers’ week is about saying thank you to volunteers, it seems only right to say “thank you” to all the people who saw the potential in me and allowed me to volunteer in the first place. You’ve made my life better because of it.
A few years ago, in 2016 to be exact, I wrote a blog post about 30 things I wanted to do before the age of 30. I am now two and a half years away from the big three-oh (OHMYGOD) so I decided to look back on those goals and do an update.
1) Complete a masters degree.
I have applied for a masters degree and if all goes to plan, I should have finished by the age of 31, so I’m counting that as in process.
2) Work in a role which supports young people with mental illnesses.
Done, since leaving university, all my jobs have been supporting young people with social and emotional needs in some capacity and it continues to be my plan for the future.
3) Travel the world.
This hasn’t been so successful. I have traveled in the past four years but nowhere near as much as I was hoping. As I became more unwell, my priorities changed and I realised that as much as I want to explore new places, I also like being near an English speaking hospital or somewhere with a good healthcare system. I’ve realised that owning my own house is also higher up on the list of priorities so when I’m able to save money, it goes towards that.
4) See the Northern Lights.
See above. Although I do plan on going to Iceland one day because I think it is a beautiful country. Maybe when Rona has stopped ruining everyone’s lives.
I am literally the most single person you could find. I am happily a cat lady and not sure how my cat would cope if I started sharing a bed with someone else. That said, I would like to marry and probably have children, just right now that’s not something I’m focusing on. If it happens, that’s great but equally, I’m not actively looking for Mr Right.
6) Have children (hopefully).
As above. I wrote a blog post recently, about frequently asked questioned that people with EDS get asked and I touched on the baby and child thing in that. In short, yes, I would like children, but I have to consider the risks to myself, but more importantly my child. EDS complicates things a bit. I’ve said more about the whole thing here.
7) Have my own house.
Twenty-three year old me was very naive about the cost of Adult Life. I’m in the process of saving and am considering selling a kidney to fund a deposit. Joking, joking. I like to torment myself by looking at Right Move and to admire all the houses that I can’t afford (aka so all the houses) but I really hope that by thirty, I will be in a better financial position to be able to afford my own little abode.
8) Be financially stable.
To be fair, I would say that I am fairly financially stable. I was on universal credit for two years and it really taught me about the importance of budgeting, although even before that, I was pretty good with money. I don’t take money for granted and I love the feeling of satisfaction when I’m able to buy something that I have saved a long time for. Right now, I’d much rather save money than spend it, however that doesn’t include buying books or anything from the Body Shop.
9) Sing on a West-End stage.
As if I’d ever really have the confidence!
10) Sky dive.
I plan on doing this, as soon as it is possible! As I’ve said in other posts, I spent over six months as a psychiatric day patient in 2019 and I really want to give back to the day hospital to say thank you. The building is old and the interiors are more than a little run down and I would love to be able to contribute to a more cosy atmosphere, making it feel even more like a safe place. Watch this space!
11) Bungee jump.
I think I was being a bit over-optimistic here. This would probably break me.
12) Complete a half marathon
Really, Laura?! I have no desire to do this.
13) Complete a triathlon.
I haven’t completely ruled this one out. I found out that there is a Superhero Triathlon which is specifically for people with disabilities and I think I’d to complete it.
I feel really uneasy publicly saying that I’m okay and that things are going well. Not because I need validation around being ill, but because I am a little bit scared that somehow talking about things being okay will jinx the situation and things will start going very wrong. But I can’t live my life in fear and actually, for the first time in a very long time, I am happy, content and enjoying life. Obviously the whole corona-coaster thing is problematic and it throws up issues, but as I said in my post about dealing with lockdown and mental health, I am coping amazingly well.
So what has changed?
A few weeks ago, things were not this good. The exact opposite in fact. As it happened, the referral into the mental health team, that was suggested, was refused and the additional meds that I was put on didn’t work for me, and I think that this is the best thing that could have happened. I decided to take control of my own life and to stop coasting through, depending on other people. It came down to mind over matter, although I want to make things very clear at this point, that I do not think that this is a clearcut “cure”, not for me or for anyone else. My problems haven’t magically disappeared, but I made the choice to start addressing things, instead of self destructing and living in a mindset where I had given up.
I know and accept that I still need help, but I want to be in control of that help and to get support in a way that I find is beneficial for me. My experiences with the community mental health team were poor, I would leave appointments feeling worse than when I entered, I was made to feel like I wasn’t sick enough to receive help, despite being very unwell and I felt that I wasn’t in control of my own life or choices. I’m still engaging with therapy but for the first time ever, I am viewing it very differently. I have been having therapy in varying forms for years and years and had always just accepted that I would have therapy for life and that was that. But now, without setting myself a time limit, there are certain things that I know that I need to work on, and more importantly, I feel ready to work on. It’s not going to be an overnight thing, it is still probably going to take years of work but I’m not going to just tread water and not move forward.
I’ve also learnt what works for me and what doesn’t. My choice has been to engage with services such as Mind and other local charities, and dip in and out when I need support. I’m not pinned in and it isn’t time limited. Plus, the wellbeing workers who I have met before, are all good eggs and genuinely care and want what is best.
Most importantly, I am making plans for the future. I’m using my time off work sensibly and working on continuing professional development, as well as undertaking various online courses to improve my CV in the long run. I’m really excited to say that I have applied for a masters degree in social work and I’m currently going through the agonising wait in hearing back from the university. I am making plans around moving out and setting myself goals in achieving that.
It’s crucial to say, I am not naive. I don’t think that I am magically better. There are still things that I am struggling with, a lot, but I am accepting those things and being honest about them. My physical health is still problematic and causes its own limitations and that is always going to be something that I have to work around. I’m also not kidding myself into thinking that my mood and ability to cope will not, ever, fluctuate again. But I kind of feel more prepared for that. Small steps. That’s all anyone will ever ask for.
May is Ehlers-Danlos Syndrome Awareness Month, and so far, I have been pretty quiet about it. However, now seems like a good time to answer some questions about EDS, that I am frequently asked.
What is EDS?
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue in the body. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones and make up over 20% of our bodies. There are 13 different types of EDS, caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents, or in some cases, the faulty gene isn’t inherited and can occur in a person for the first time. The most common type of EDS is Hypermobile EDS (hEDS, formally known as type 3) . Rarer types include classical EDS, vascular EDS and kyphoscoliotic EDS.
Does it hurt?
The simple answer to this is yes, it does hurt. I am on painkillers daily. These reduce some of the pain and symptoms that I experience but they don’t get rid of them. In some ways, I’ve got used to being in pain, so a lot of the time, I’m able to block it out and I’ve learnt to live my life around pain. I’ve got a fairly high pain threshold (never cried after breaking a bone kind of high). When I have an EDS flare, things can become more difficult because my pain levels become harder to manage. In these situations, I often have to increase the medication that I take and I’m usually found attached to a heat pack or hot water bottle. Increasing medication comes with its own issues, such as more side effects, so taking more medication isn’t something that I like to do.
Have you tried…?
Probably, yes. I have tried so many things to try and alleviate symptoms, with varying levels of success. Kale hasn’t cured me, nor has a clean eating diet. Similarly, eating quinoa hasn’t cured me. Different things work for different people, EDS affects every single person differently, so whilst a hot bath with epsom salts works for me, it might not work for one of my friends. Aside from medication and heat therapy, I have regular physiotherapy appointments, where my joints/tendons are put back into place or I have ultra-sound therapy, which is a non-invasive way of reducing inflammation in the body.
How did you catch it?
I didn’t. I was born this way baby. Ehlers-Danlos Syndromes are genetic conditions, so I have had EDS all of my life, I just didn’t know. As far as I know, no one else in my family has EDS, meaning that despite being symptomatic since the age of nine or ten, I wasn’t diagnosed until the age of twenty two, as no one was looking for it, or suspected it. EDS is also classed as a rare disease, which makes the diagnostic process longer and more complicated. On average, it takes ten years for a person to be diagnosed with EDS, from the first onset of symptoms. EDS UK ran an awareness campaign highlighting the length of time it takes to receive a diagnosis of EDS. You can watch the video here.
Can you have children?
I have no idea, mainly because I’m not in a position whereby I am trying to have children. However, the diagnosis of EDS in itself does not stop you from having children, but it can lead to a higher risk of complications for the mother and baby. I am very mixed about wanting to have children. In an ideal world, I would love to have children and I would love to be able to conceive naturally, but I am mindful of the fact that EDS if genetic, so there is a 50% chance that I could pass it on. I wouldn’t wish this condition on anyone and that includes any future children. EDS is an unpredictable beast: some days I am absolutely fine, with minimal restrictions, other days I can’t move from my bed and require care from another person for basic daily tasks. Having worked with children and young people who are young carers, that has to be something I will need to consider. Hopefully in time, I will be in a better position to properly decide what is best, because right now, I don’t have the answer.
When will you get better?
I won’t and I find it so difficult when people ask this question or say that they hope I get well soon, because I am not going to get better, in the conventional sense. I have periods of time when things are more manageable, and I lead a fairly normal life but the downside to that is the inevitable payback. And payback is a bit. In the five years since being diagnosed, my health has declined hugely, although that isn’t completely down to EDS, but also co-morbidities, such as gastroparesis and POTS. A future with EDS is sometimes quite scary to think about because I don’t know from one day to the next how functioning my body will be, but I have to remain hopeful that treatment options will improve with time and research.
Will you die from it?
This is probably the worst question that I have been asked, in relation to EDS and it’s such an important one to answer because of that. To make this question hit even harder, it was asked by a paramedic, whilst I was being rushed into hospital by ambulance. I reminded him that this job is to try and prevent me from dying. I know that he was asking out of curiosity because he hadn’t treated a patient with EDS before, but there’s a time and place. As I said above. there are 13 different types of EDS and vascular EDS can be life limiting due to the possibility of organ and vessel rupture. Life expectancy is not usually shortened with other forms of EDS. That said, conditions that are co-morbid with EDS can impact on life expectancy. If you have gastroparesis for instance and have intestinal failure as a result, the sad fact is that death from a lack of nutrition can and does happen. EDS can, in many cases, cause progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system. No one with EDS knowns what the future holds and emotionally, that is a big thing to deal with.
Staying indoors has become the norm in the UK, with the country adapting to life in lockdown due to the coronavirus outbreak. The government imposed the lockdown on the evening of Monday 23th March, meaning that we couldn’t leave our houses, except for permitted times such as one outing for daily exercise and essential travel, like going to work if you’re a key worker and going to medical appointments. The way of life in the UK changed very quickly, we couldn’t (and still can’t, at the time of writing this) visit the houses of friends or family, use leisure facilities, visit attractions, gather in large groups spend time outdoors, unless it was for exercise.
Whilst lockdown in the UK hasn’t been as strict as in other countries, it has been completely different to life as we usually know it. As someone who thrives on routine and structure, suddenly not being able to work despite being a key worker, see my friends and extended family or use a leisure centre was incredibly difficult and I know that I’m not alone in feeling like that. I started isolating before it was enforced, due to underlying health conditions and I am now on week ten of isolation/lockdown and whilst it was hard towards the beginning, I am getting used to this being my normal. Sometimes it feels like a bit of a slap in the face, after spending over two years out of work and effectively very isolated because of my health, to now being forced into isolation again, when my physical health is pretty good and I was back in a working environment.
We are now at a point where lockdown restrictions are easing but it is going to take a long time before we are back to normal. Social distancing is set to last months and restrictions could be put back in place if cases start to peak again.
So how am I staying sane?
I didn’t cause COVID-19 and I can’t take it away. As much as I joke about my frustration about it being caused by someone eating an undercooked bat, there is so much more to it being a global pandemic than that and it’s can’t be simplified. I like to be able to control every single aspect of my life and going through lockdown has taught me that sometimes, I can’t be in control and that I need to just go with the flow. I don’t know when I’ll be able to go back to work, I don’t know when medical appointments will resume and return to normality, I don’t know when I will next be able to hug my friends, but everyone is in the same position. I could make myself unwell, stressing over things that I can’t change, or I can accept it and deal with things as they come along. No one can easily fix the situation we are in, sure people can stay home, wash their hands, social distance, use common sense and not go round licking lamp posts but that isn’t going to change things over night. Life will be very different for everyone as a result of COVID-19 and we will need to adjust to that new normal.
My support system changed rapidly as infection rates spiked. I still have therapy but it’s over Skype and I still speak to my GP but it’s on the phone. As lonely as isolation can be, I know that the support is still there, just in a different format. I’m not having any physio which is hard and I’m not seeing my support worker, as the service she is attached to has temporarily closed. I’m not going to lie, some days are hell: I get angry and I’m probably not a very nice person to be around. Some times I am an anxious mess. Other times, I plod along, doing what I can to make the days easier and taking little steps to keep my brain occupied. Asking for help is not selfish, it is normal to be finding life hard to deal with right now, so we need to show ourselves a little kindness and compassion. And if someone is in a bad mood and is more snappy than usual, or cries over something stupid, don’t take it personally. Give them a virtual hug and remind them that they’re not alone.
One of the biggest things that I’ve come to realise is that I need to be realistic. Like I said above, some days I feel like I can take on the world, other days, I would happily stay in bed and tell everyone (but mainly BoJo) to fuck off. Reading has been the one thing that I’ve been able to fall back on during lockdown, I can happily spend day after day reading, but I accept that shutting myself away in a fictional world isn’t always what is best for me. Or my eyes. That said, I do have days when I’m not in the mood to read and I’ll be honest, initially, I would beat myself up for that, as though reading a book in a day was the marker of success. Trying to stick to some form of routine has been hard, but as much as possible, I make sure I’m up at the same time every day, I do some exercise, read, talk to friends, do some of the endless adult or medical admin and go to bed at a sensible time. I keep my room as just somewhere to sleep and make sure I spend daytimes in other rooms of the house, or the garden, to try and vary my environment as much as possible.
I’m not saying for one moment that I have completely got this whole lockdown thing sorted. Ask me tomorrow and I’ll probably be fed up because I want to go swimming and because I can’t see my friends, but actually, I’m doing okay. This isn’t forever.