30 Things

A friend of mine recently posted her adaptation of 30 Things about her Ehlers-Danlos Syndrome, and I thought it was a great way of answering some questions about illnesses that aren’t talked about enough. I’m focusing on both physical and mental illnesses, as they are all just as important as each other. With it being 30^th May, I thought it was the perfect time to post 30 things about my illnesses that you may or may not know.

1. The illness I live with is: M.E, Clinical Depression, Atypical Anorexia, Borderline Personality Disorder and I am being investigated for a Connective Tissue Disease, possibly a type of Ehlers-Danlos Syndrome.

2. I was diagnosed with it in the year: M.E – 2003, Clinical Depression and Atypical Anorexia – Roughly 2004/2005, Borderline Personality Disorder – 2013 and am being assessed now for a Connective Tissue Disease/EDS.

3. But I had symptoms since: Birth for some symptoms such as dislocations, pain etc. M.E symptoms became particularly apparent in 2003. Mental Health problems came in about 2004.

4. The biggest adjustment I’ve had to make is: This is a bit of a difficult question, as my symptoms have gradually become apparent, as I’ve gone through my life. When I was a baby I had to have the brace fitted for my hips, so my parents had to adjust the way they looked after me. I’ve had to adjust the way I approach things like studying and work, by pacing myself and perhaps taking a different route to get qualifications using ways that suit my needs better. With regard to mental health problems, the only adjustments I really have to make is ensuring I follow a meal plan and being able to voice when things are getting difficult to try and keep myself safe.

5. Most people assume: That if they see me doing something ‘normal’ or eating something then I must be better, or if I look ‘well’ that I’m not struggling. What they don’t see is how I am at home, either struggling with eating or my mood, or when I’m having to rest/crawl up stairs/have someone help me to wash, just so I could do that normal activity. I’ve also had people assuming I’m lazy because I can’t always do things that others do. And there have been a lot of assumptions that all my symptoms are in my head, when I do also have physical problems.

6. The hardest part about mornings are: Being able to push through the pain/nausea/sickness and dizziness to actually get up and take my medications and then try and eat some breakfast. It takes me quite a while to actually feel half decent, but I don’t always have the luxury of time, so if you see me in the morning and I’m not very chatty, it’s usually because I’m trying to keep myself standing!

7. My favourite medical TV show is: I enjoy watching Casualty and Holby City, although I annoy my family because between my brother (an Emergency Care Assistant) and I, we are always pointing out mistakes in how they deal with various illnesses and equipment. If I want something more lighthearted then Scrubs is always a good bet. I also loved 24 Hours in A&E and occasionally will watch House.

8. A gadget I couldn’t live without is: Probably my phone as it allows me to keep in touch with friends and family, which is especially important when I’m not well and need a parent to come and help me! I also put reminders on my phone for various things, which is a lifesaver as my memory is terrible!

9. The hardest part about nights are: The fact that I’m alone. For some odd reason symptoms seem to be worse at night – be it pain, nausea, shaking, dizziness. My Mum will often stay up with me, but there’s not much she can do apart from sitting with me, so I’ll tell her to get some sleep, as it’s not fair to keep her up. Mental health symptoms can also get worse at night, and if my insomnia is bad then nights can feel like they’re dragging on and my thoughts are racing, while I try to make myself sleep!

10. Each day I take __ pills: It can vary a lot depending on the symptoms I am experiencing and how severe they are. I don’t like taking medications, but a lot of the time there isn’t much choice because if I didn’t take them I’d feel a lot worse. Currently I think I take roughly 20 tablets a day.

11. Regarding alternative treatments I: Am willing to try alternative therapies, as long as they don’t make me feel uncomfortable. I know that some people swear by them, and I think it’s great if you can find something that alleviates symptoms, but so far I’ve not had much success. The only thing that does help me is massage, but unfortunately I can’t afford a personal masseuse!

12. If I had to choose between an invisible illness or visible I would choose: That’s a bit of a difficult one, as I’m in two minds about my answer. In one respect, if I had a visible illness then people might actually believe me that there is something physical wrong with me, but then I know even people with visible illnesses face judgments and prejudice. Having an invisible illness can be preferable because you can choose who you tell about it to a certain extent. A lot of the time I look completely healthy, which has certainly been helpful at times when I’ve not wanted people to know I struggle with health problems. When I’ve been using a wheelchair I often get looks when I stand up and walk a bit – people assume that if you’re in a wheelchair you have no use of your legs, but actually only a small minority of wheelchair users are completely paralysed. The biggest thing I hate about times when my illness is more visible (like when I use a wheelchair) is that a lot of the time, people treat you like a second-class citizen. They talk about you to the person pushing your chair and look at you with pity, which is just awful!

13. Regarding working and career: I’ve had to make sacrifices with work and my career because of my illnesses. I originally wanted to be a doctor, but, for no want of trying, I just haven’t been well enough to do the intense studying and long hours to qualify. I have been able to work sporadically, and when I’m not able to I genuinely miss it so much. I don’t like not being able to provide for myself and feel incredibly guilty for relying on other people. Career wise, I’ve had to think about what I liked about the idea of being a doctor, and then look into other careers that would allow me to meet some of these goals and dreams. I’m currently hoping to study as an Occupational Therapist, but I know it’s not going to be easy.

14. People would be surprised to know: Blood tests still make me faint! I’ve lost count of the amount of blood tests I’ve had, and I have no problems with seeing blood, or even watching others give blood. I’d even happily watch my own blood tests, but for some reason my body just can’t cope with them and I pass out. It usually happens when they can’t get blood straight away and have to wiggle the needle around, so I now lie down before we start. I once fainted in the middle of the hospital reception, and, despite there being doctors and nurses wondering around, it took a receptionist to come over and help me!

15. The hardest thing to accept about my new reality has been: In a lot of ways this isn’t a new reality, as I’ve had difficulties since I was born. Although I guess in the first few years of my life they didn’t affect me too much and I lived a relatively normal life. When my health took a nosedive at 15, that was when I was faced with this new reality, and it took me a long time to accept that I may never feel well again. Ten years on, I still struggle with my diagnosis, because for a lot of my symptoms it doesn’t make sense, which is why I’m still fighting for the correct diagnosis. But I have accepted that I am different from my healthy friends. However, I have also accepted that this doesn’t mean I can’t do things I want to do. Yes, there are some things that would be incredibly difficult, but the vast majority of my goals are still achievable, with some little adaptations.

16. Something I never thought I could do with my illness that I did was: Feel confident. I’ve always been a very shy person and hated having to stand up in front of the class at school. I’d do anything to try and blend into the background and not be singled out by the teacher. Even when I first became ill, for a while I tried even more to blend in because I hated people making comments about me. But over the last few years I really feel that I’ve become more confident, and I think a big part of this has been that I’ve accepted my illnesses and stopped blaming myself for having them. I’ve now done an article in Cosmopolitan, where I went to London on my own for a photo shoot – I never used to do anything on my own! I’ve been asked to do radio, but unfortunately haven’t been well enough yet, and I’ve started my blog. I’m even planning to branch out to vlogging now. In my opinion it is so important to talk about these illnesses to help people understand them, but also to help others who are going through them.

17. The commercials about my illness: Are pretty non-existent! The only adverts I’ve seen about M.E are posters produced by charities, which is a real shame as I think it would be amazing to see some TV advertising to try and break the misconceptions about the illness. The same goes for EDS. There are some adverts about mental health problems, which are usually fairly good, showing normal people with a few words about what they struggle with. I like these adverts because it shows that anyone can suffer from mental health problems.

18. Something I really miss doing since I was diagnosed is: Dancing. I used to dance nearly every day after school – ballet, tap, modern and street dance, but since my M.E surfaced I’ve not been able to do it. I did try when I had a good period, but even then my balance, dizziness and pain made it incredibly difficult. The only dance that I could probably cope with would be some gentle ballet exercises, as I’ve found gentle stretching can be helpful.

19. It was really hard to have to give up: My dreams of being a doctor. I’m not sure it is something I will ever truly get over, but I’m starting to accept that it just wasn’t meant to be. Saying that, my illnesses have opened so many doors that never would have been opened without them – I’ve made some amazing friends and had some fantastic opportunities, so I wouldn’t change what has happened.

20. A new hobby I have taken up since my diagnosis is: Crafting and blogging! I’ve always been an arty person, but it was only when my health took a nosedive that I started doing more crafts like card making and scrapbooking. It’s nice to feel like you’re achieving something when it’s been difficult to do so in other areas of your life. Blogging is something I only took up fairly recently, but I love the fact that I can be part of a community where I’m not judged by my illnesses. I’m also teaching myself to crochet and knit, although finding it hurts my hands quite a lot at the moment.

21. If I could have one day of feeling normal I would: Organise a full day of activities and then stay up to watch the sunrise. I’d meet up with friends, go shopping, perhaps go to a theme park and eat out in a restaurant without feeling ill. In the evening I’d perhaps go clubbing, as that’s something I’ve never been able to do properly, without having to leave early. Then in the early hours I’d drive to the beach to watch sunrise.

22. My illness has taught me: Who my real friends are. This was quite difficult, as I had friends who I thought would be there for me, and then they weren’t. I’m not going to lie and say I accepted it, because to be honest it still hurts, and it still happens now. But I do know that the friends that have stuck by me are the most amazing friends I could wish for. Being ill has also taught me not to take things for granted. Even little things, like being able to wash my hair or go for a little walk feel special to me now, because there have been so many times I haven’t been able to do them. It’s made me look at the world through different eyes.

23. Want to know a secret? One thing people say that gets under my skin is: You’re being lazy/it’s all in your head. I find it so frustrating when my physical symptoms are blamed on mental health problems – I know my body and I know I have both physical and mental problems, I just wish other people would understand that sometimes and support me. I also get infuriated when people imply that I’m lazy, because if they really knew me they’d see that I am far from lazy.

24. But I love it when people: Accept me for how I am and accept that I know my body more than anyone else.

25. My favourite motto, scripture, quote that gets me through tough times is: There are so many lovely quotes that help me get through life, but these are a few of my favourites:

“It will be alright in the end. If it’s not alright then it’s not the end.”

“Of course it is happening inside your head, Harry, but why on earth should that mean that it’s not real?”

“Happiness can be found even in the darkest of times, when one only remembers to turn on the light.”

26. When someone is diagnosed I’d like to tell them: To take one day at a time and not stress about the future. It’s advice that I should take on, but worrying about the future will only make you feel worse. Sometimes it is just enough to focus on getting through each day. And never feel ashamed of your illness because it is not your fault.

27. Something that has surprised me about living with an illness is: The amount of competition between some people with illnesses. I’ve never understood the whole ‘I’m more ill than you are’ arguments, so try to pull away from people who always have to do one better than you!

28. The nicest thing someone did for me when I wasn’t feeling well was: There have been so many lovely things people have done for me. Whether it’s been sending me some thoughtful post, sending me a text or even popping in for a visit. It was particularly nice when I was in hospital and some of my closest friends came to see me. I was feeling incredibly ill and didn’t want people to see me, but they were completely normal with me and treated me no differently to they had when I was out of hospital. I really appreciated that. I’ve also had friends who have dropped everything to come and see me when I’ve been having a difficult time.

29. I’m involved with Invisible Illness Awareness Month because: The illnesses I suffer from are still so misunderstood and I believe it is important to talk about them to help break misconceptions. I am also involved for other people who are suffering, to show them that they’re not alone in what they’re going through.

30. The fact that you read this list makes me feel: Incredibly grateful! I hope it has left you with something to think about, or spurred you on to talk about it with someone else.

Do you have any questions about what I’ve written here, or anything else to do with my illnesses?

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