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

A Quick Update

As I write this it’s nearly 23.45 on a Sunday night, and whilst I’m having a break from essay writing I’d thought I’d provide a brief update. The past few weeks have been really, really hectic. I’m in my final year of undergraduate study at university, and though I do not think the work has necessarily become harder, I feel that there’s far more of it, resulting in later nights and earlier mornings. By the end of the next week I’ll have written close to 12,000 words, so I can’t wait to have a little break before resuming semester two. Studying with a chronic, long-term condition can be really very stressful, so I can’t wait to have a breather, take some analgesia and hopefully feel like myself again.

There’s LOADS of things I’d like to share on here, too. I’ve been lucky enough to have some great products that have really helped during this time. My dad knows how painful I find essay writing, and so he was kind enough to buy me a RelaxWell Dreamland throw which has become a new favourite of mine! I’ll let you know how I’ve been getting on with it.

I’ve also been slowly (yet surely) ploughing through my box of DeGusta goodies, and I’ll be able to update you on my progress with it. Food is definitely something I look forward to during an intensive assessment period, so it’s always wonderful to have a break, eat some really delicious food, and then have the energy to resume working. It almost makes the work bearable!

It is with regret I must finish this post and resume reading. I hope to update you all really soon, and look after yourselves until then.

Best wishes,

Heather

The Importance of Relaxation

I have to admit I’ve always been a stressed out, anxious person. It’s in my nature to worry about everything, and sometimes this worry is completely overwhelming and all-consuming. Coupled with chronic pain, my anxiety can spiral out of control. Being in pain almost constantly is physically exhausting, and can really affect you mentally. When I was younger I acted as if my cerebral palsy and Scheuermann’s didn’t exist. I think this was my ‘coping strategy’, but of course I wasn’t really coping with anything at all, I was just denying the existence of my medical conditions. Since moving to university I’ve recognised this, and during the past year or so I decided I needed to really work out a way of coping with the pain and stress that comes along with chronic medical conditions.

I cannot emphasise how extremely important it is to have rest days and to relax your body and mind if you’re dealing with a health condition such as cerebral palsy. Even if you’re not living with a chronic medical condition, you still need to give yourself time out to truly relax and to forget the worries in your life. When I was younger I thought it was perfectly fine to be completely wiped out from exhaustion after a day shopping, or to be in agonising pain after sitting to eat a meal in a restaurant. Yes, it’s normal for me to be in pain, but my body needs time to recuperate and get back to its normal self. There’s a few ways I do this, and I thought it would be a useful thing to share with you all.

Heat therapy is so relaxing. From a bubbly hot bath, to a hot water bottle and my trusty heat pad, heat therapy is soothing and relaxing for my body. I particularly like the homedics range and I own the shiatsu back massager, shiatsu neck massager and hand held massager with interchangable massaging heads. Below is a link to their products through boots: http://www.boots.com/en/Homedics/

I also love the heat packs that you heat in the microwave. I own a particularly cute one in the shape of a cuddly rabbit! These are relatively cheap compared to the homedics range, and can really help on sore days.

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Having hot baths with some pamper goodies can really help me out, too. The Body Shop stock some gorgeous products and you can always find lots of voucher and discount codes online if you type in ‘body shop codes’ into your search engine. Using high quality pamper goodies doesn’t always have to break the bank, so stock up if there’s a particularly good offer on. Recently my boyfriend purchased £40 worth of products for £20, which is an absolute bargain!

I also love candles. When I’m needing a rest day, I’ll get some reading together and spend the whole day in bed, taking painkillers as and when I need to. Putting a few candles on can really create a lovely soothing atmosphere. I also love my mooncandles, which are flameless and battery operated. You can change the colours of the ‘candles’ using the remote they come with, and they’re really very pretty. I purchased mine from Tesco. You can also purchase them online. I apologise for the picture, but it’s very difficult to capture just how pretty they are on camera!

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Having de-caffeinated drinks is a must when I’m feeling anxious or in a lot of pain. Though I thoroughly enjoy coffee and tea, I find herbal teas are particularly soothing on a stressful, painful day. I love Twinings Camomile and Honey, or the Twinings Peppermint Infusion. I was also introduced to Peanut Hottie at the Hull bloggers meet, and this is becoming a firm favourite. If you’re a fan of peanut butter, I suggest you give it a go!

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For my 21st birthday, I was spoilt rotten by all my wonderful family and friends. My boyfriend did make me a desk top zen garden as one of my gifts, and I’ve found it a really lovely way to relax. I wouldn’t say I’m particularly into the concept of zen or Buddhism, but raking the sand whilst stressed is a great way to relax yourself. Plus, it makes for a very unique object and you can create lovely works of ‘art’ in the sand with a mini rake. Zen gardens are available to purchase ready made online, however my boyfriend made this out of a photo frame. He glued the glass into the frame and turned the frame over. All he had to do then was buy the sand and objects to go into the zen garden, and he let me assemble it myself. It’s such a thoughtful gift, and it’s a true pleasure to own it. For secret Santa, my housemate thoughtfully bought me an oil burner with a selection of essential oils. This is such a fantastic gift for me and the essential oils create a soothing atmosphere in my room. Alongside my zen garden, it creates my very own relaxing space, and it’s really great!

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Buying a bouquet of flowers or a plant for my room instantly brightens up the place and so makes me feel more relaxed. I loved these gorgeous yellow roses. I arranged them in my marmite tea pot, and I thought they looked really lovely.

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I hope I’ve given you some inspiration. Hopefully in no time you’ll have a relaxing place of your very own!

All the best for the rest of the weekend,
Heather