New Starts

Hello, lovely reader. Sorry it has been a little quite over here, but I’m finally feeling ready to get blogging again. My summer job really took it out of me physically and I had to get emergency appointments for uncontrollable pain and a couple of days off which made me feel completely awful. However, I’m currently relaxing under a fluffy blanket and feel like I have the strength needed to write a little informative post. After what has been a challenging year, I’m beginning to think that this month has been a turning point, particularly with regards  my mental health. I’m sat in my flat (I only just moved into it a few days ago) surrounded by lovely, wonderful things,and everything feels so bright and colourful and fresh. I am on the ground floor which makes painful days so much easier and there’s a big garden i can look at through the living room window. There are a couple of cats that hang around in the garden, and right at the very end is a genuine ww2 air raid shelter, which is quite amazing. Drew is moving in fairly soon and I’m really looking forward to living together. It all feels very grown up but I’m really excited as we get on so well.  I have wonderful friends I’m looking forward to seeing soon at university and I can’t wait to start my postgraduate course. Finally things are just blissfully falling into place and I’ve been going to bed with a big smile on my face almost every night and I can’t remember the last time ice felt this good! My pain is still very much present but I’m in a good place mentally and feel that I can deal with it; I’m just feeling so positive. I’m really, REALLY glad that I made the decision to take medication for my anxiety/depression. It’s truly changed my life and I’m so grateful to get what feels like a second chance.

Yesterday I went to the Hull Bloggers summer meet, which was a truly wonderful day, filled with chat, nibbles, interesting brands and many goodies! Expect a post explaining the day soon with reviews of wonderful goodies to follow! I’m in a Good Place right now, and I’m sure it’ll only improve after my pain management appointment tomorrow

Im sending love and positive vibes; I hope youve had a wonderful Monday 🙂

Heather x

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It’s Wednesday

Hello there lovely readers. This is just a super quick update really as I take a break from writing up essays and proof reading my dissertation! It’s all come around so quickly so I’m glad to be keeping on top of it. Things are a lot better since my last updates; couldn’t really deal with living at my own house so I’ve temporarily moved in with my boyfriend whilst I get my work out of the way. It’s definitely for the best, and it’s keeping my anxiety levels down. Pain levels are quite difficult to deal with at the moment but I know I can push through and get through the work. I’m not worried about that aspect of things at all. Just letting you know I haven’t abandoned this or anything, and I’ll be back to my regular rants/silly things as soon as possible. Also thought you’d like to know I’ve just set up a tumblr account as well, and you can find me at http://nosuperheroblog.tumblr.com/ . There isn’t much going on over there at the minute but I thought I’d give it a go to supplement my wordpress blog! Give me a follow if you wish and feel free to send me any links to your own accounts; I’d love to see what you’ve been up to!

All the best and happy Wednesday,

Heather x

What Not to Say to Someone With Chronic Illness and Disabilities

Hello there, and thanks for stopping by! This is going to be a slightly unusual post today, but it’s something I’d really like to share with you all. As you may know, I have a form of cerebral palsy- mild spastic hemiplegia – and a spinal condition called Scheuermann’s kyphosis. These are long-term illnesses, with no cure, so it’s just about learning to manage and live with the associated pain and mobility difficulties to ensure I have a good quality of life. What has been really shocking to learn is that people assume they’re an expert of chronic illness and think it wise to give out tips and advice. I know, we’ve all been there, but it’s something that never ceases to amaze me! After all, I know my body better than anyone, and I know how my conditions affect my day-to-day life. I just thought I’d share a few snippets of advice I’ve often found funny, and usually unhelpful. Some comments are pretty hurtful, but I know some are simply well-meant.

Just to clarify, this is not a dig at anyone at all, and this isn’t intended as something to offend any well-wishers: I just think it’s helpful to realise sometimes things aren’t always what they seem and maybe we can all think before we say something to someone. You never know how your words are going to affect someone else.

‘Chronic illness? But you look so well! How is this possible!?’

I get this a lot. I really do. And whilst I can appreciate I do look ‘fine’ most days, it can be very frustrating to hear. Firstly, it makes me feel fraudulent. No, I don’t use a wheelchair, and even when I use my walking stick I appear able to walk normally and without difficulty. However, I spend the majority of my day in constant pain, and it’s really wearisome having to reiterate this. Secondly, there’s also the idea that if I’m dressed up nicely or have make up on, that I can’t really be that ill, because, you know, I’ve made ‘an effort’. Having chronic illness doesn’t mean you have no desire to feel good. I still want to look as nice as the next person, and when I feel like it I really enjoy wearing a little bit of lipstick now and again. It just goes to show that you never know what’s underneath it all. (oh, I also enjoy wearing a bright shade of red when I can…makes me feel I can take on the world, especially on bad days!)

‘Why don’t you try exercise? I’ve heard it really helps [insert illness here].’

I have couple of things to say about this one. What I do seem to notice is people often recommend exercise when they don’t really understand the condition. Last year, someone asked what cerebral palsy was. Immediately upon hearing this, they proclaimed that exercise would cure it. Funny…they didn’t know what it was prior to asking! Though I know exercise is fantastic, and I do exercise as much as I can to keep my muscles as flexible as possible (particularly in my hemi side) sometimes the nature of my conditions limits me in terms of exercises. Some I simply can’t do. Most others leave me in a lot of pain. People also assume that I don’t try/never have tried/that I’m unfit anyway. I happen to walk quite a lot, and considering walking is something I find challenging, (particularly with regards to the palsy) this can sometimes be very painful and very tiring. However, I always try. Sometimes I try too much, end up walking for miles (often in a bid to push myself) and subsequently suffer for it. What I’m basically trying to say is don’t assume exercise is the be all and end all. It can be brilliant, but think about it: if you’re in severe pain, would the first activity to spring to mind be a jog/some workout at the gym? No? Didn’t think so.  Also, I’ll add here that when I was at school I still used to take part in PE and sports days despite my medical conditions and difficulties. One memorable sports day I volunteered for a long distance running race. At school, very few people knew about my cerebral palsy, but when I crossed that finish line (I came fourth out of eight) it was amazing. I’d done it; I’d also competed against people with no mobility or pain issues. It was possible, but I won’t say it didn’t hurt. I can still think back to the feeling of intense burning, crampy, sickening  pain in my hemi leg that followed. The PE teachers gave me some little gifts to say well done: they appreciated how difficult it must have been for me and I’m truly grateful for that. It’s an experience I won’t ever forget.

‘Ah, get well soon!’

I feel bad about including this comment, because this is obviously well-meant and I appreciate the sentiment. However, it is difficult to explain to people that my conditions won’t get better. I have done this once or twice, and I’m usually branded a pessimist. I just call it being realistic: there’s no cure for either. They fluctuate on a daily basis. Yes, some days are better than others. But I will be living with these for the rest of my life, and I have (mostly) come to terms with that. I’m still sad I included this one but hopefully you’ll understand what I mean!

‘You’re just an old lady really!’

This really, REALLY annoys me. This reiterates everything I feel about myself. Some days I wake up in so much pain I feel like I’m years older. I can’t do normal household chores without intense back pain, I can’t go shopping without my body hurting and I can’t do ‘younger people’ stuff like clubbing without things becoming very difficult. Of course I enjoy a good dance every now and then, but it becomes extremely painful. The next day is an issue not because of the ensuing hangover (well, at least not the majority of the time) but because my body is tired…it’s tired of the pain. Don’t call me an old lady. It’s never okay. It’s one of these things that really get to me. Calling me an old lady basically confirms all my worst fears. I have a hard enough time thinking of myself in this way, and I’d rather you didn’t add to that.

‘You’re just lazy/milking it’

I just don’t even know what drives people to say things like this. I didn’t choose to have these conditions. I can’t help that sometimes I need rest and relaxation. Just try putting yourself in someone else’s shoes: do you think it’s easy living in pain every day? It is also well-documented that people living with cerebral palsy use more energy than an usual. It’s tiring stuff. The latter part of the above comment was one of the more hurtful things I’ve heard. When I was in school, I had to wear a spinal brace. This was extremely uncomfortable. I had to wear it 23 hours every day and the hour off was for showering/PE. Because it was hard plastic, it dug in everywhere, and I’d end up with bruised hips, itchy skin rashes and marks cutting into my skin from the plastic. It constantly forced my spine into an unnatural position, and this was painful. Wearing that brace was awful. I felt detached from my own life: it was like I stepped into a magazine and became someone else. ‘Will I have pain for the rest of my life? So, you mean it’s incurable? My spine might get worse?’ These were questions I found hard to ask and even harder to understand when I was thirteen. I was thrust into a world of painkillers, hospital checks, physio, pain management, and procedure after procedure. This was on top of my appointments for my cerebral palsy. Having people claim I was milking it was something I really didn’t need. How insensitive can you be?! The worst part is that a person who said this talked behind my back and told my friends I was ‘milking it’. At the same time, they’d be really lovely to my face and would offer to help me in any way they could. As you can imagine, hearing that was extremely hurtful, and I never really associated myself with them at all after that. I still avoid having to now, despite the fact we have mutual friends. Please don’t do this, ever. The last thing I’d ever want to do is feign an illness. If I had it my way, I’d be completely healthy and have nothing wrong at all. As it stands, I’m not. Don’t make assumptions because you don’t understand.It’s a comment that I haven’t ever been able to shake off since the age of thirteen, and I don’t think I’ll be able to forget it.

I know this is an unusual post, but I hope it has given you something to think about! On a light-hearted note, I have two huge bars of chocolate to get me through the last couple of weeks of essay writing. I know I can do this, but it won’t be easy. Wish me luck!

I’m getting closer to that finish line…

Heather x

Anxiety and Depression Toolkit

Hi guys, so sorry for the lack of posts recently. It’s been super hectic here since I’m coming to the end of my final year but I thought I’d just write a quick post documenting a few things that have helped me through the most difficult phases of my anxiety & depression. I like to call it my ‘toolkit’. Please bear in mind that though these things often work for me, they might not work for everyone. If you’ve been reading you might be aware I’ve recently started on regular medication to keep my anxiety and depression under control, but these things were somewhat helpful prior to starting my medication. I’m hoping it might give anyone out there who’s struggling at least a couple of ideas!

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Above are a few little herbal remedies. Now, I’m not one to say these seriously work. However, I gave them a go. And though I can’t say whether the herbal remedies themselves did anything, just carrying these things with me and using them from time to time made me feel as if I was at least slightly in control. My favourite is Bach’s Rescue Remedy. Just the act of spraying it on my tongue seemed to calm me down slightly. It’s got quite a bitter taste; it isn’t really pleasant, but it seemed to snap me out of anxiety attacks in particular. I didn’t have much luck with Kalms, though. In the little bag are my worry dolls. For someone who is quite logical and often extremely rational, it might sound a little weird that I’d carry these around. And again, it’s not like I seriously believe they work, but carrying my worry dolls with me made me feel at least slightly in control. When I have them with me, I always feel comforted. Think of them as a lucky charm.

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Above I have my little notebook. When I was having counselling, my counsellor suggested to carry around a little notebook to note down when I’d have anxiety attacks. As soon as I could write in my notebook, I did, and I’d list a) what is was that triggered my attack, b) how the attack made me feel, c) what I did to try and calm down and d) reflections on the situation and now I’d try to avoid a similar situation in the future. This tactic was really helpful for me as i learnt when things were more likely to trigger my anxiety in public. It also helped me to come to terms with the fact that some things do trigger an anxiety attack, but that once it’s over, I’ll be okay. I really recommend this technique. I bought this small notebook from TK Maxx and it was small enough to fit into my pocket. Even though my medication has helped me tremendously, I still like to carry my notebook around just in case I ever need to use it again.

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Above is my Aston Filofax in Orchid leather. I love my Filofax; I plan my life in it and it really helps to give me a sense of routine and structure. When I was at my lowest points, my filofax became very important for instilling structure and routine into my schedule. It was also helpful to make plans well in advance (spontaneity is not my strong point). I also find making to-do lists really helps to calm my nerves as I can cross off tasks when they’re completed. This Filofax was a Christmas present but I know they’re not cheap. However I’ve had it for years now and I honestly couldn’t live without it. My paper refills this year were from paperchase (and I think they’re rather gorgeous!).

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Reading is a great way to relax. Though I was initially reluctant to get one, (I’m a huge fan of paper books…they’re such a pleasure) my kindle is absolutely fantastic as it means I can carry literally hundreds of books with me at any time. I love my kindle and it has really helped me get through anxious days.

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Using candles with comforting scents is such a luxury, but it’s definitely something I appreciate when I’ve had a hard day. Yankee Candles are exceptional, with gorgeous scents and a great throw. The scents really fill the entire room. Fluffy Towels is a very comforting, fresh and clean scent. It smells like freshly washed laundry. It sounds odd, but I promise It is very relaxing.

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Finally, I like to remind myself that things will be okay, no matter how bad I’m feeling right now. If you’re struggling with anxiety and depression, just know you can get through it. I’ve achieved so much since starting my medication and I’m really proud of myself. You just need to find what works for you, but I promise you’ll get there. I hope these ideas are even just a tiny bit helpful.

Remember to look after yourself.
Heather x

Happiness is…

This post will be an amalgamation of things that have made me happy over the past few days. I did say I’d post every day but since I’m in my third year of university I’m currently swamped with essay writing and reading (so I’m not surprised it didn’t last). However, here’s some happy things:

1) getting on track to sort out my anxiety/depression (FINALLY). I’m now feeling so much more positive and I’m hoping I’ll be able to see the light at the end of the tunnel soon

2)eating my only easter egg of the year

3)cooking a tasty dinner of pan-fried salmon fillet with mash, samphire and homemade lemon-cream sauce. It was really delicious and such a treat

4) going to the pub for a few drinks with friends. Even though there was an incident that made me feel very uncomfortable and anxious, I got through it and still had a good time overall

5)bumping into friends I don’t see very often. It’s always a lovely surprise.

What’s made you happy recently?

Heather

9th April, 2015

Hello there, you lovely reader. If you’ve been catching up with my blog this week you’ll have noticed that I’ve been doing ‘Happiness is…’ posts to try and get me to focus on the happy things in my day-to-day life. I think when you deal with anxiety & depression on a daily basis you really need a reminder of the good things. It’s all too easy to get stuck in that suffocating perpetual darkness. However I’m doing a slightly different post right now because today has been really difficult and I think talking through it might prove somewhat cathartic.

My anxiety today was really, really bad. You know when you can feel it coming, so you desperately attempt to suppress it but find out it’s going to burst through anyway? Yes? That was today. It all started with a few events from yesterday. Last night I burnt my wrist on my left hand. I am left-handed but I also have a mild form of spastic hemiplegia (a form of cerebral palsy) in my right side. The easiest way to describe this is as if it’s a stroke; it’s exactly the same kind of thing, but because the brain injury occurred before my birth, it’s classed as cerebral palsy. Because of this hemiplegia it’s difficult to use my right hand, arm, leg and foot so burning myself fairly badly on my good wrist was completely stupid and silly. Of course I didn’t do it on purpose, but I wish I’d have been a bit more careful. Sigh.

So this morning in the shower I had to dangle my burnt left wrist out of the cubicle, whilst I attempted to wash my hair etc. with my hemi hand. This proved difficult, so much so I gave up after trying to lather the shampoo in my hair for 15 mins. I rinsed myself as quickly as I could and got out. I was frustrated with it. Having hemiplegia is really annoying and I didn’t realise how much I rely on my left hand until today. It’s almost like there’s a loose connection in my right hand, because you know what you want your hand/leg to do but it isn’t quite doing it. It’s like there’s something missing, something absent, something wired incorrectly.

Because of this I think I felt a whole lot worse than usual. Additionally, I had a bad, anxious night last night. So I shouldn’t be surprised that today was terrible, but there you go. I headed out to get my burn looked at in the pharmacy, having done my make up nicely (or so I hoped). Things were relatively fine with the anxiety until I realised I’d been sold the wrong type of product for my burn. Then, I tried to apply the thing I’d bought to my burn with my hemi hand. Needless to say I couldn’t do this very well so gave up. This further added to my frustration and because my anxiety was bad anyway, it started to worsen as I left the pharmacy. I was focussed on getting home, but generally I was okay if not a little annoyed that the product was not what I had wanted despite having asked for it.

A minute or so down the road, a balloon popped in my left ear as I walked past a cafe. This proved to be the last straw.

If anyone knows anything about neurological disorders, you’d know they often come with a healthy heightened startle reflex. Basically I jump at a lot of noises people wouldn’t even bat an eyelid at. Balloons popping, fireworks, gunshot and other loud bangs are really bad and I jump very suddenly. I can’t help it; I can’t predict if or when it’s going to happen. Some days I’m worse than others. It makes your heart beat really fast, gives you a feeling of fear and panic and becomes unbearable. Anxiety makes this reaction even worse as I’ve found out. I started to panic, I was really fearful and upset and I just needed to get out of the situation. I started to cry, things had got too much and I didn’t know what to do. I was alone. I tried to ring Drew but there was no answer. I cried so much I could feel my mascara running into my eyes and down my cheeks. I know I must’ve looked an absolute mess.

I hurried home to get to a safe spac, when luckily Drew rang back. He calmed me down, and I managed to stop panicking. I couldn’t believe it. Why had this happened? With my counselling a regular thing, I thought I’d got past this stage. It wasn’t just embarrassing, but incredibly disappointing. I feel like I’ve taken one step forward and ten steps back.

So today has not at all been very happy. I did manage to get some reading done, however, so that was a bit of a relief. I just wish I could get over these situations and get on with living life, without having to worry about popping into a shop or bumping into someone or any other trivial, silly thing. I’m hoping that tomorrow I’ll have some happy things to share with you.

I’m sorry for my long, poorly-articulated rant. I’m currently in bed surrounded by soft toys and Chinese takeaway, so please do excuse me.
I hope your Thursday has been a little bit more positive. I’m hoping tomorrow will be a brighter day.

Heather

On the Mend

It’s been a while since I’ve posted on here, and for that I do apologise. Things have been extremely busy with university study, but I thought now would be apt to share my recent experiences particularly with regards to the counselling treatment I’ve started (see https://nosuperhero.wordpress.com/2015/02/28/validation/ ). I have to say I didn’t really know what to expect when it came to my first session; the only ‘insight’ I’ve had into counselling/therapy consisted of jokey allusions to it via shows such as Family Guy which is perhaps rather unfortunate. The set up was what I expected though: me and the counsellor in a small room, perhaps with a cup of tea, boxes of tissues and sheets of paper to fill out. My first steps into the room were apprehensive ones. Though I knew it was an amazing thing to have got there, I still wanted to turn back and leave. I wanted to turn around, run through the front door and seamlessly merge back into the crowds walking the streets of Hull; I didn’t want to have my life probed and picked apart. I knew though that there was no going back. This could prove to be the beginning of something wonderful, something life-changing.

After completing the mandatory paperwork (filling out scales 1-10, ‘how easy has it been for you to get out and about? etc) the session started. Almost immediately afterwards, the tears began to flow. Tears not only of anxiety and sadness and frustration, but tears of relief. Someone was sat in front of me who genuinely seemed to express an interest and concern for my life. They made me feel (for once!) at ease somewhat. And most of all, things started to make sense. I’ve had two sessions so far and I’d like to think I’m finally on the right track, or at least headed in the right direction, whichever that is. I’m under no illusions. I know this will take time and although each session has been emotionally exhausting, I just feel like for once I can see a glimpse of light at the end of the long, dark tunnel. It’s a glimmer of light I couldn’t be happier to see.

Here’s to hope and new beginnings…

Heather