For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Monday, 19 January 2015

10 Ways to Offend Someone With a Chronic Illness.

In my life, I have experienced the ignorance of people first hand. Usually because, until I had an oxygen tank, my illness was invisible (it stops being so invisible when you have a tube on your face) and people didn't understand how debilitating asthma can be, after all, most people who have it can survive with just a few inhalers and maybe occasionally tablets. It doesn't just happen to me, I know many people who have a varied number of chronic and invisible conditions and people can be so judgemental towards them.

1. "...but you don't look sick..."

This is probably one of the worst ones I have been subjected to. It's a way of implying that just because you don't look stereotypically ill, (and what is stereotypically ill anyway?) then you can't be having any real problems or be in any real pain. This always gets my back up and provokes a response of "well, you don't look like an ignorant prat, but here we are." I will speak my mind about things and well when people say things like that, I have to speak up and tell them that I think that they're ignorant.

2. "[insert name here] has [insert condition] and they get along perfectly well. Why aren't you?"

This is another really ignorant way of implying that you shouldn't be the way you are and can't possibly be suffering because someone with a milder form of the condition doesn't suffer the same way. I know some asthmatics who can still do things like cycling, that's great for them. But for me, my condition makes even the simple stuff almost impossible. So, kudos to those whose condition means that they aren't limited in the same way, fantastic, but sadly I am not one of those. Sadly my condition means that I can't get out of bed, make myself a cup of tea and carry it to the living room. I can't walk the short distance to the shop and back. Heck, I can't even wash and dress myself without wearing myself out. I do try and do what I can, and everyone who knows me can vouch for that, but the effect it has on my body afterwards is often huge.

3. "Oh well, it could be worse..."

This is just a way of making a disabled person feel guilty for how they feel. Yes, there are people out there who do have it a lot worse and I have a lot of empathy for them. Just because my condition isn't as bad as theirs, doesn't take away from what my condition really is. You can try and belittle it and justify yourself in doing so if you want but there are just some things that are ignorant.

4. "Just think positive! That'll make you feel better!" 

If that ideology was true, then certainly sitting and thinking "I am the king of France" over and over again will suddenly see me getting crowned as the king of France. Right? No? So, no matter how many times I sit here and think "I'll get better by thinking I'm fine." then it just isn't going to fix my body or unscar my lungs. It isn't going to make my breathing any easier and it certainly isn't going to help me feel better, if anything, it makes me feel worse because I crash when I realise my reality is as it is. I try and look on the bright side but I do so with care and consideration as to my situation. It is like an "educated positivity" if you like. I look at the reality of the situation, take in to account what I can and can't do.

5. "Have you ever tried [insert treatment here]? It worked for [insert name]."

You can be sure of one thing, I have tried as many different things as anyone could think of. I have tried yoga, acupuncture, physiotherapy and a list of different drugs that is probably longer than my arm. Some things helped. Some didn't. Heck, some of the things we tried made it worse. I had the diagnosis of asthma rechecked to ensure we had the right answer. I did as much as you could think of to either ease my symptoms and not need so many medications. I wouldn't choose to be this way. I wouldn't WANT to be this way and desperation has led me to try so many things. I take the advice of a doctor I spoke to once. "Let the doctors do the diagnosis, not other people. Tell [the person] that they should stop trying to diagnose people otherwise they will kill someone."

6. "I'd love to be able to stay at home all day, not work and have everything paid for me."

Again this is one of those things people say to make you feel guilty. Actually, sitting at home and not working is not as great as you would think. I get really bored and there are only so many hours I could dedicate to hobbies or leisure activities. I don't go out much, usually because it takes so much planning and preparation beforehand (how long I go out for, do I have medication, enough oxygen, do carers know I won't be in, that kind of thing). Heck, I do have a job, it is called "surviving". This job means that I have to take on a role as my own nurse, give myself the correct medication at the correct time and attend appointments and collect prescriptions. I manage my pain and breathlessness and I think I do a fair job of it. As for having everything given to me, I wouldn't say that was all that great either. Its hard to explain but I don't enjoy being on benefits because I can't work. I used to work and I loved it. I loved knowing that my money was earned through hard work.

7. "You're too young to have so many problems/ be on so much medication."

Alright then, I'll just go and tell all the children who are ill that they can't be so unwell as they're "too young". The cold, hard fact is that illness isn't picky. It doesn't choose whose life it devastates based on age, sex, race or anything else. Illness happens and it can/does happen to anyone. Yes, there is a larger proportion of age related conditions and going in to hospital can be daunting as you are the youngest in the bay, this is undeniable but there are also people who are ill who are young. Does that mean that they too deserve scorn and judgement? No. Just no.

8. "You look terrible!"

Thanks... You know, I never noticed that my skin is pale or greyish and I have rings under my eyes blacker than the Ace of Spades. I know I look terrible when I don't feel well at all and don't need constant reminders or sympathy. Neither of which won't fix anything. What I need is empathy and to be treated like a human being rather than facing judgement. When someone says these things, I know they're only trying to be caring but really, it just doesn't help in pointing it out. I do what I can to try and hide when I look worn and drained because I don't want people to treat me differently.

9. "You should get more sleep/ fibre in your diet/ fresh air/ drink more water..."
"And perhaps you should stop criticising me and how I live." I live with this every day in my life. I eat and sleep what and when I can and I do try and get out more, weather depending or if it's too cold I tend to stay indoors to prevent things getting worse. I have to tend my needs and I know exactly what I need and when. I try and eat healthy (fruit and veg, not too many takeaways) as much as I can and my illness allows and yes although all these things are important, they aren't a magical cure all. Again, I know people say it because they want to appear like they're caring but at the end of the day, you can't cure an illness without looking at what it is.

10. Nothing. That awkward silence.

Admitting to yourself how you feel is hard. Admitting it and telling others is even worse. It means you have to let someone in and be vulnerable and tell them what's wrong. The hardest thing about it is when you tell someone something, whether good or bad, and they don't say a word or you get a half-hearted "OK". It makes you feel like crap because its like you want to scream "don't care too much! I've only just told you something that was hard to me and you just shrugged it off." Luckily the people I care for and care for me don't give me the awkward silence when I tell them something, but its something I have had happen, it made me feel like crap and like no matter what I said, it didn't matter. So, my symptoms were a little better today? So what? Oh, no big deal, but I just spent the last hour trying to breathe and have an ambulance on the way.

I don't want a fuss. I just people to care, not fuss or be dismissive towards the fact that I have a condition. It doesn't make me less than a person or inferior. Sometimes its as important to emotionally support someone and ask them what they really need or feel. It's also important to listen. Understand. Empathy is important, but it isn't always found. If you do happen to find yourself with someone with an invisible condition or illness, don't be quick to judge. Remember that it isn't always what you can see.

Better things to say would be:
1. "How are you feeling now?"
2. "Thank you for having the strength to tell me, I don't understand completely but I do care and love you very much."
3. "Is there anything we can do to make it easier?"
4. "Can you tell me more about [condition name here]? Or point me in the right direction."
5. "What is important for me to know about your condition, what makes it worse/better?"
6. "I know you're trying as hard as you can."
7. "It's OK to feel scared or upset."
8. "I'll always be there for you when you need me."
9. "I admire you because you never give up."
10. "It's not your fault, but I know you can do it."

I just hope that in posting this, I can break a barrier of ignorance and usher in a bit more understanding and compassion towards other people with conditions. You don't have to look a certain way or have any signs for a condition. Please don't judge what you don't understand, try and learn, understand and help.

Wendy xx

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