How I Survived Lockdown

c5912582950c0186a1fc30b74387836cI 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. 

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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.

Dear 18 Year Old Self

Dear Laura,

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.

Risk it.

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.

You’ve got this,

Laura x

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Emily McDowell

 

 

30 before 30 – An Update!

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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.

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Copenhagen, Denmark 2016

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.

5) Marry.

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.

14) Raise £1000 for Blue Skye Thinking.

I raised just over £500, so I’m happy with that.

15) Write a book.

Ahhh I don’t know about this one. So many people have said that I should write a book and there’s part of me that would like to, but the thought of it also fills me with so much anxiety.

16) Publish an article for Huffington Post.

Done! And I have also had articles published on The Mighty.

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17) Meet some of the people who I have met online and thank them in person for all they have done for me.

This list is ever growing but I have been able to meet so many people, who I originally met online, including trekking up to Scotland and meeting friends there.

18) Cuddle an orangutan.

I’d love to do this, but I’m more aware about conservation and actually, cuddling orangutans isn’t good for them.

19) Complete the North Wales zip wire.

I’m still desperate to do this.

20) Teach young people to not be ashamed of who they are.

I’d like to say that I try and do this in day to day life, it’s something I’m really passionate about and I will forever be people’s biggest cheerleader.

21) Become and MP and fight for what I believe in.

No and right now this is not part of any plans. I am interested in politics but I’m more comfortable contacting my current local MP and having a rant on twitter.

22) Learn basic Polish.

This hasn’t happened, but I have self taught myself British Sign Language and Makaton/Sign Supported English.

23) Thank every single person who has made a difference to my life.

I probably haven’t thanked every single person, but I do make a point of thanking people regularly.

24) Go to a festival and not spend the entire time grossed out by the toilets.

Let’s be realistic here, I can’t think of anything worse than festival toilets. I’ve gone to festivals on a day ticket and that’s enough for me.

25) Visit all of the the seven wonders of the world.

See above for why travel is complicated.

26) Live for a week without internet, TV, phones etc

I haven’t done a week, but I have spent a long weekend away from social media/TV/my phone, when I was visiting a therapeutic farm and living in a therapeutic community. I was not a fan.

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Kent, England

27) Go to Wimbledon men’s final

Maybe one day.

28) Leave a note for a stranger in a public place.

I’m not sure if I’ve done this or not, but if I have, I’d like to do it again.

29) Learn how to take a compliment 

I’m getting there, slowly. It still makes me feel uncomfortable and like I want to hide under a stone but there has been progress.

30) Fall in love, deeply, properly and unequivocally.

I have fallen in love but not romantically. There’s plenty of time.

Ehlers Danlos Awareness Month – FAQ

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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.

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How to Talk to Someone With Depression

Depression can really change how a person thinks and perceives information. It can cause friction between friends and family members and often lead to a person feeling even more isolated. Depression is a mental illness that can affect anyone. It is not something that you can simply snap out of or a sign of weakness.

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Mental Health Foundation

Below are some ideas around talking to someone with depression and questions that might be helpful.

Ask if they have had anything to eat or drink. If not, suggest having a glass of water and have something to eat if they can manage it. Talk about healthy and quick options, to avoid carb-loading which is likely to only give a quick burst of energy. Foods that are rich in protein are good. The thought of cooking for yourself when you are deep in depression can be too much to even consider, so offer support in buying healthy and nutritious ready meals that can be shoved in the freezer and cooked easily.

At the risk of sounding like someone from a crisis team, asking someone if they have had a bath or shower when they are feeling awful is sometimes an idea, providing the person is able to keep themselves safe in doing so. Self care is terminology which is thrown around by crisis teams very readily, but there’s no denying the fact that feeling clean is going to make you feel slightly better about yourself than being unclean. I get it, I really do, the energy and effort involved in having a bath or washing my hair means that it’s the last thing I want to do when I am depressed, but I try to remind myself that I deserve to be clean and I deserve to look after myself.

Again, at the risk of sounding like I am regurgitating snippets from the crisis team, encouraging someone to stretch their legs and move from their bed or the sofa is a way of showing that you care. I am not for one moment suggesting that you need to be walking miles in the picturesque countryside or be running a half marathon, but a quick walk around your immediate local area is enough to get those endorphins zipping around. Gentle exercise in the home is an option if you can’t face leaving the house, you can find lots of simple home exercise routines on Youtube, if you can’t face watching a highly positive and energetic fitness blogger and the NHS has home workout videos which are easy to access and follow.

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A big part of depression is shutting yourself away from people and not engaging with friends and family. This is definitely something that I do and I am fortunate to have a really support group of people around me, to check in with me and talk rubbish to distract me from the mess inside my head. Encouraging people to talk can be with friends or it could be with a medical professional. Ask if they have had any medical input and find out when the next planned contact will be. You can work out if you should be encouraging them to make contact with a professional sooner, or, if it can wait, suggest writing things down, to share next time there is contact. Don’t be afraid to offer physical contact, like hugs, but know that this doesn’t suit everyone. Whilst I love a good hug or cuddle, I know that for some people, this is their idea of hell, so knowing what works for the individual person is important. Pets are also a value source of companionship and support.

Ask if they have had any changes in medication and if they are taking their medication are prescribed. New medication can really mess with your head, especially in the early days when withdrawal is a risk and side effects of new drugs are more prevalent. Make sure that they are safe, as some medications increase suicidal thoughts and ideation and then wait it out with them. If things don’t improve after a few weeks, suggest contacting their GP.

If you don’t know what to say, just say that: tell your friend that you are there for them. As a humans, we want to immediately have the answers and be able to solve every single problem that we are faced with but sometimes, that isn’t possible. Let them know that you’ll be there, don’t accuse, threaten, blame, or make light or joke about how they might be feeling. Reminding a person that you care is one of the most important things that you can do. Knowing that you’ve got someone holding you up and fighting the beast alongside you is less isolating and is a reminder that you matter.

It’s worth remembering that what works for one person might not work for another. Asking how you can help and if there is anything in particular that would be useful is another way of showing that you care. Not everyone is open to the offer of help, not everyone knows what help they need and what you think is helpful and what they think is helpful could be two very different things.

Even if you can’t relate to a person’s problems or they seem insignificant, don’t belittle how they are feeling. Try to resist solutions that might seem simple to you. Most importantly, don’t make judgements on how they are feeling. Everyone’s feelings are valid and we all react in differing ways to situations. That doesn’t make us wrong, weak or defective, it makes us human.

Lockdown and Mental Health

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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.

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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.

Mental Health Awareness Week

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So as I said in my last post, my May favourites: lockdown edition, it has been well over a year since I last sat down and put pen to paper. The main reason for that is because 2019 was a really awful year. Towards the end of April 2019, I was admitted as a day patient at a psychiatric hospital, near to where I live. Things had got very bad, very quickly and I plummeted into crisis point without much warning. The care, compassion and support that I received from hospital staff was amazing. They genuinely saved my life and that isn’t something I say lightly.

After three weeks in hospital, I was transferred to a step down provision, which is jointly run by Mind and the NHS and I was there until July. It was, undoubtedly, one of the hardest things I have gone through. Having struggled for over ten years with my mental health, I never expected it to get to a point whereby I needed to be in hospital for my own safety. It was new and scary but made so much easier by the fact that I was treated with dignity throughout and made some wonderful friends. We laughed together, cried together, despaired together, rolled our eyes at other patients and ultimately, supported each other through a horrible time.

I was discharged in July and for a few weeks, it felt like I could take on the world but it quickly became apparent that I wasn’t yet ready for the world (and the world wasn’t ready for me) so at the end of August, I was readmitted and remained a day patient until the middle of December, when I was very suddenly discharged from all mental health services.

Having spent over six months in some form of day patient provision, to suddenly be faced with going it alone was a terrifying prospect. I soon worked out that it would be sink or swim and that I would have to work very very hard in order to stay out of hospital and to try and rebuild my life.

A year on since my first admission, I think I’m doing okay. Things are different, but good different. I have a job that I love, I’m working with the best people who make me cry with laughter and I am incredibly fortunate to be surrounded by endless support and understanding from my line manager and senior staff. Juggling a job, mental illnesses and chronic illnesses is hard at times, but I’ve never been made to feel inferior to other members of staff or like an inconvenience.

Obviously it hasn’t all been plain sailing. The past few weeks have been challenging, not because of covid or lockdown, more because it hit hard when it got to a year since being admitted. I’m the first to admit that I am hard on myself and there was quite a lot of beating myself up behind the scenes because I’m not where I expected to be or where I want to be in life. I was referred back to the mental health team, however the referral was refused. At the time, I was angry and felt let down, but a few weeks on and I think that the referral being refused was the best possible outcome. I don’t want to be under the mental health team and constantly be having to prove that I am sick enough to warrant their care: I want to get better and I want to get better for myself, not so services can put a tick next to my name and say that they’ve cured me. I don’t think I’ll ever be cured, I think I’m always going to struggle to some extent with mental illnesses, but I am learning to live my life along side them, instead of them dictating my life and my choices.

It’s a really cliched thing to say but my experiences last year changed me, but they changed me in a good way. It made me realise how passionate I am about mental health and the link between mental and physical illnesses. It taught me that sometimes, the only way out is through. Sometimes there isn’t a quick fix and you’ve just got to ride out the shit times and catch that bear.

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There’s so much I could say about it being mental health awareness week. But the simple fact is that we are aware. There is so much awareness, what there isn’t is adequate support for people who are struggling. We are told, time and time again, to reach out and ask for help, but so often that is ignored, or you’re made to wait an inexcusable amount of time, or you’re given the most basic input because it’s deemed to be the most cost effective. This country has a problem and that problem is that mental health is not seen as a priority. One in ten children and one in four adults will suffer from some form of mental health problem at some point and quite frankly, being kind is not enough to stop that. There needs to be more funding, better research into best treatment methods, more early intervention, less silencing through medication and more treating people are individuals. Until that happens, sadly, I can’t see much changing.

Addison’s Disease Awareness Month

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There seems to be an awareness month or day for everything these days, but I’m going to take advantage of that and the fact that April is Adrenal Insufficiency awareness month.

I was diagnosed with Addison’s Disease in August 2018, so I’m still fairly new to the disease and very much still learning about managing it.  Addison’s Disease is also known as primary adrenal insufficiency and is a rare disorder of the adrenal glands. The adrenal glands are two small glands that sit on top of the kidneys. They produce essential hormones: cortisol, aldosterone and adrenaline. In short, having Addison’s Disease is usually the result of a problem with the immune system, which causes it to attack the outer layer of the adrenal gland (the adrenal cortex), disrupting the production of the steroid hormones aldosterone and cortisol. This means that my body doesn’t produce any cortisol. In a normal person, extra cortisol is released when they are unwell, have a shock or injury, so I need to be really careful when this happens and I will need to take medication for the rest of my life to replace the missing cortisol.

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When my cortisol is low and prior to diagnosis, I felt very unwell. I had such low energy levels that I spent more of my time in bed sleeping. No amount of sleep helped and it was a whole new level of exhaustion that I can’t put into words. As well as the exhaustion, I was also very weak: my legs would give way because my muscles felt so weak and mentally, I felt incredibly fragile and cried a lot.

Despite Addison’s being a rare disease, I found the diagnostic process pretty straight forward. I had a blood test to check my cortisol levels: at 9am they should be over 400… mine were are 87. Following on from this, I was referred to endocrinology to have a synacthen stimulation test, which is where a synthetic hormone is injected to encourage the adrenal glands to produce cortisol.  Mine didn’t produce the cortisol, which led to the diagnosis of Addison’s Disease.

Adapting to life with Addison’s has been hard. I think out of all the conditions that I have, Addison’s has been the condition which has had the biggest learning curve. Whilst my other conditions can mean that I feel very unwell, I can’t die from them: I could die from having Addison’s if it isn’t managed correctly. On the same day of diagnosis, I went into adrenal failure and was rushed into hospital. When Addison’s Disease is left untreated (or prior to diagnosis), the levels of hormones produced by the adrenal gland gradually decrease in the body. This causes symptoms to get progressively worse and eventually leads to a life-threatening situation, called an Adrenal Crisis.

I’ll be honest, I remember very little from being in crisis. I was very confused and dizzy and drifting in and out of consciousness. I couldn’t stop being sick and the weakness that I was already experiencing worsened to the point that I couldn’t stand up. It was a steep learning curve in how quickly it needs to be treated, had it been left I could have faced slipping into a coma or death. Scary shit.

One of the hardest things that I have to deal with are the rules surround sickness. In a normal person with Addison’s, if they are sick more than twice, they need to inject hydrocortisone and call 999, to be admitted to hospital for treatment. Because I have gastroparesis, I am sick. A lot. I am also prone to cyclical vomiting, which can be dangerous with Addison’s. Managing the two conditions side by side is a challenge but I have learnt to distinguish between my gastroparesis sickness and other sickness. Despite that, I still need to be vigilant and have spent many hours in A&E at risk of slipping into a crisis because of vomiting, praying that the magical anti sickness drugs will work.

Having Addison’s is made easier by the fact that I have an amazing team looking after me: shout out of the staff on Bagot and Drake Ward at the Churchill Hospital in Oxford for looking after me (and my mum) and answering all my endless questions to ease my anxiety.  I don’t dread endocrine hospital appointments because the staff are so lovely and friendly. I think the fact that I had already been diagnosed with long term illnesses, prior to my diagnosis of Addison’s made it slightly easier to get my head around, but it was still a shock, especially when it was hammered home that if I don’t look after myself, I could die.

I’m open to any and all questions about Addison’s Disease. I might not have all the answers but I’ll do my best or will signpost to support/information.

 

March Favourites

Here we are, another monthly favourites blog post. I was too unwell to write a monthly favourites post for February, and I’m not going to lie, I missed it a little bit. It’s such a good way of looking back over the month and picking out the good bits; chronic illness can be miserable and isolating so it’s nice to remember that life isn’t always like that!

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Books

My standout book from this month has got to be Paper Avalanches by Lisa Williamson. I’ve read Lisa’s previous two books and fell in love with The Art of Being Normal but was underwhelmed with All About Mia. Put simply, Paper Avalanches was a beautifully powerful book that I read in one sitting. Looking at parental mental illness, through the eyes of a teenage young carer, it gave a fresh look at the stigma surrounding hoarding and how dangerous it can be. Ro Snow is a character full of warmth and wisdom, way beyond her fourteen years of age and her frustrations towards Bonnie are quickly shared by the reader. I hope this book wins all the awards that it deserves.

Another book which I have loved this month is Looking at the Stars: How incurable illness taught one boy everything by Lewis Hine. Diagnosed with a life-threatening brain tumour and water on the brain at 17 months, he wasn’t expected to survive. But Lewis proved everyone wrong; he’s not only surviving but thriving. In one Facebook post on his sixteenth birthday Lewis invited everyone to see how he faces head on the challenges from his ongoing illness, and he went viral. Thirty million views later, Lewis now spearheads a campaign, Friend Finder, to make sure no one ever faces childhood illness alone. In his book, Lewis reflects on his brain surgeries and continual health problems, which are a daily challenge. He is at high risk of sudden unexpected death in epilepsy (SUDEP) and has a pump in his brain just to keep him alive and experienced horrendous bullying. Lewis shares how he finds the strength to overcome all this and still lead a fun and fulfilling life. 

My third and final literary favourite for this month is A Girl Called Shameless by Laura Steven which is part of the Izzy O’Neil series. In Laura’s first book in the series, we met Izzy, a loud and confident teenager who was subjected to revenge porn, something which is yet to be criminalised in the United States and the double standards surrounding the videos, in terms of gender stereotyping and feminism. In this second book, we catch up with Izzy, two months post sex scandal, The Bitches Bite Back movement is gathering momentum as a forum for teenage feminists, and when a girl at another school has a sex tape shared online, once again Izzy leads the charge against the slut-shamer. This time she wants to change the state law on revenge porn. If you’re interested in politics, feminism and gender debates, this is a book for you.

 

Film and TV

I haven’t watched much on television this month, combined with needing a lot of sleep and binge watching the box sets of Waterloo Road (judge me if you must), there hasn’t really been enough time. That said, I’ve been loving the Great Stand Up To Cancer Bake Off and have chuckled away and the celebrities’ awful baking skills, whilst being left wondering how they actually function in real life.

 

Spoonie Favourites

I’m fairly sure that I’ve taken about Nuun tablets before, but they’re so great, I’m going to mention them again. Designed to keep you hydrated wherever your active lifestyle takes you, Nuun tablets are packed with optimal electrolytes, containing clean ingredients. I was recommended Nuun tablets by a doctor in London to try and keep my hydration levels up and now use them daily. I’ve noticed a huge difference in terms of my concentration levels, which is saying something, considering I often have the worst brain fog possible.

Because of how unwell I was in February, being admitted to hospital was looking very likely. I (like many people) find hospital environments really stressful and I became aware that I wouldn’t manage with just my iPad to distract me due to battery life and charging etc. This lead to me to buying a portable DVD player which has been one of my best purchases ever and it has saved me during the long nights of insomnia when I haven’t wanted to turn my TV on and wake my mum.

Odds and Sods

I’m ending this blog post on a slightly different note. At the start of February, a friend lost her long battle with mental illnesses and sadly died. Megan devoted her life to helping others, even when she was struggling immensely herself. Her death has left a huge Megan-shaped hole in the mental health community and people are still trying to come to terms with her sudden death. In 2012, Megan founded the Recovery Shoe Box Project, Recovery Shoeboxes are mental health toolkits containing items that help you cope when times are hardest and coping feels difficult. Each box will include items that might distract, pamper, soothe and motivate and they are personalised to the individual receiving them. Since Megan’s death, £8,785 has been raised in order to keep her project on-going as a legacy to her. The aim is to reach £10,000 and after that who knows. If you’re able to donate, it would be much appreciated.

 

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Simon Godsave and Recovery Shoe Box Project

 

 

 

 

 

 

2018 Favourites

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Well, we’ve made it to the end of 2018: a year which has caused the British population to overdose on Brexit, we had the Beast from the East and the hottest summer in forever. Baby Shark made us want to spoon our eyeballs out and the I’m A Celeb Class of 2018 gave us the ultimate body confidence song, I Like My Bum.

I’ve really enjoyed writing about my monthly favourites, throughout the year, so it only seemed right to reflect on the whole of 2018 and the things that I’ve loved.

Books

My stand-out book of the year has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. Since first reading this book in May, I have gone on to re-read it numerous times, each time picking up different aspects of the plot that I hadn’t noticed when reading before. I’m really pleased that Khan is releasing his second book in early 2019.

Another book which I have to mention is We Are Young, the latest book by YA author, Cat Clarke. Having only discovered Cat Clarke this year, I very quickly made my way through all of her books and it is a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue. What I loved most was that Cat writes about mental health in such a sensitive yet balanced manner. She doesn’t sugar-coat how difficult being a teenager can be and We Are Young also touches on the government cuts to mental health services and youth services and how this impacts on the most vulnerable in society. I can’t wait until Cat’s next book is out. No pressure Cat!

A book that hasn’t featured in any of my previous monthly favourites posts is Vox by Christina Dalcher. This book was extraordinary, so much so that I read it in one sitting. It’s very unlike any books that I normally read, but I was drawn to it because of the linguistic and neurolinguistic element in it. In dystopian USA, women and girls are limited to speaking only one hundred words a day. This is measured by a word counter which is fitted to their wrists, speaking over one hundred words means that the bracelet emits an electric shock, which then intensifies. Think 1984, with a neurolinguistic twist, I really loved it.

Films/TV

Like most of the British population, I was obsessed with Love Island and still feel that there is a hole in my life, come 9pm, as it’s not on TV to watch. Despite this, however, I will fully admit that Love Island is not a healthy representation on society and it highlights many issues, with how women are viewed and treated. I wrote a blog post about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island was a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Obviously I can’t write about my yearly favourites without mentioning Strictly Come Dancing. As always, I have loved loved loved this series, especially with the added controversy and drama. Stacey and Kevin were well deserved winners, having had the SCD journey, with Stacey going from complete novice to a talented dancer.

My stand-out TV programme of the year has to the The Bodyguard. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

As for films, the ones I’ve loved the most are Ladybird, Mamma Mia: Here We Go Again and Wonder. 2019 is looking good in terms of film releases and I’m especially looking forward to Toy Story 4 and Lion King.

Spoonie Favourites

The Body Shop has to have a mention here, as their skin care has (mostly) kept my skin in reasonable condition, when I haven’t felt eel enough to properly look after it. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup or having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. Products which deserve a mention are: Tea Tree Anti-Imperfection Night Mask is specifically formulated to care for blemishes and imperfections whilst you sleep and the hydrating face mists which saved my skin from heat induced sweats over the summer.

Another spoonie favourite from this is Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up, or when I’m bloated. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I’ve lived in Tesco jeans, since discovering them earlier in the year and I’m so impressed by the longevity of them. They’ve faded slightly but for the most part, they still look as good as when I first bought them.

This year, I invested in a memory foam pillow. Where has this been all of my life? Thanks to EDS, I have endless issues with my back, neck and ribs and need a pillow which offers support and it fairly firm, to support my wonky bits. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. It smells so much better than bio-oil, is less greasy and is absorbed more quickly. It hasn’t got rid of my stretch marks (that would be asking for a miracle) but they have improved: they aren’t as red or deep.

 

Odds and Sods

My first Odds and Sods yearly favourite overlaps with Spoonie Favourites. Last year, I stumbled across Spoonie_Village on Instagram. Run by the lovely Hayley, there is also an etsy shop, where you can buy all sorts of spoonie related items such as postcards, stickers, notebooks and calendars. I honestly can’t praise Hayley enough, her illustrations have made me smile during some really dark times this year and I can’t wait to see what 2019 brings.

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Over the summer, I was well enough to travel up to York, where I spent the best three years at uni, to catch up with old friends an lecturers. York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I’m able to look back on my week in York and remind myself that 2018 hasn’t been all bad, and I’m very lucky to have such supportive friends, dragging me through the tough bits.

My final favourite is the general blogging community over on Facebook and Instgram. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen, especially Amy, Pippa and Jenna.