As I was born with CF, I've not known anything different. I've known the pleasure of being healthy - this is all I've known. This may sound controversial (or not), but I think those who develop a chronic illness during their life have it harder. They've known what it's like to be healthy and reasonably, then, overnight, they develop whatever chronic illness they develop and their life changes forever. I can't imagine the pain and devastation that brings with it. Before any CFer's kick off - I know we have it VERY tough too, it's a lifelong struggle which we all wish we could take a break from, even if it's just a day or two.
Sometimes I ponder what my life would be like if I didn't have Cystic Fibrosis. I try not to because I become wistful and make myself feel blue about what could have been.
There are hard pills to swallow when being born with or developing a chronic illness (not real pills, you understand).
Here are some chronic illness pills that are hard to swallow:
1) You have to let go of the idea of having a 'normal life'
Firstly, what is a normal life, eh? Even people who don't have chronic illnesses don't have a normal life. As I said, I sometimes think what my life could have been like CF-free. I hope that there will be a cure in another lifetime for not just my illness, but for others, also. But craving for a healthy life, which I know I'm not going to have, is a bitter pill to swallow. Let's be real, I envy healthy people sometimes. Not having to worry about prescriptions, medication shortages, hospital/GP appointments or worrying about when the next flare-up/exacerbation would be a dream come true.
But honestly, I haven't got the time or energy to dwell on that. It not only gets me down, but I have accepted that this is the life I've been given, and I should just crack on with it!
2) Your illness might change the way people treat you
One thing I have hated is that people treat me differently because of my invisible disability. I don't want pity or special treatment (to a certain extent) because of my chronic illness. When I was growing up with CF, I hated being singled out in school as having an illness that none of my classmates had a clue what it was. When you're an adult, it's even worse.
I understand that some have my best interests at heart and want to be understanding and make things more comfortable for me. I just don't want people to make that decision for me. If there's something I can't do, I'll let you know - don't assume I can't do something because of my disability! People with disabilities/chronic illnesses are warriors - we can handle a lot more than you think!
3) Exacerbations/flare-ups strike at unexpected times
The worst thing that can happen is when an exacerbation or flare-up of your chronic illness occurs when you need it least. Obviously, any flare-up or exacerbation is bad, whatever time of day, night, week, month, etc. But it always happens when you have an exciting holiday coming up or a special occasion around the corner. Frustrating to say the least.
4) You constantly feel like you're behind your loved ones in life
This one hurts the most. Friends are having babies, moving house, and getting engaged/married. Meanwhile, I'm sitting here watching from the back row, wondering when it's going to be my turn. Having to tell potential suitors that I have Cystic Fibrosis is hard. Like, when do I tell him? Before the meal, or about 3 months into the relationship (if it gets that far). Nowadays, people are a little more accepting of these things, but it's still hard to explain how it impacts my life, and potentially theirs.
I'm starting to think I was a nun in a past life. Like seriously.
5) You do everything right, and things can still get bad
I do a lot of treatments and take a lot of medication every day - you'd think that would be enough to keep my body in check, wouldn't you? Umm...no. My body still has days where it fights back and decides to be a pain, and well, give me pain - and lots of phlegm.
Sometimes, I just have to cave in and admit I need a little extra help, by way of antibiotics or an emergency clinic appointment with my CF team.
Having Cystic Fibrosis won't stop me from living a fulfilling life.
But boy does it try its best to hinder that. I've always had the attitude that I will never let my illness define me or beat me. I know some days it will, but I'll always fight back!
Having a chronic illness/disability is gruelling for anyone suffering from one. There are bad days, good days and everything in between. It's important to strive and live life as best you can.
I am so sorry you are dealing with this. I know how you feel. I live with chronic illness too. In my case I suffer from abdominal adhesions which can be similar to endometriosis. It is cement like scar tissue that adheres to all the internal organs and then can cause them to grow together and on to the abdominal wall. With me they also embedded into my bladder and permanently damaged the interstitial wall which then caused ulcers. It also creates a secondary condition called SIBO which is often confused with IBS. This condition can lead to pernicious anemia do to low B12 and other vitamins not being absorbed correctly.
ReplyDeleteAnd it also creates a lot pain, and yes sitting on the sidelines of life. Yup. There is a reason I am single with no children. Making the babies is painful and there is no way a child could be carried to term due to al the adhesions the uterus would not be able to expand.
I also inherited chronic hormonal induced insomnia on the regular, and migraines and a heart condition called AVNRT for which I had to have an eblation. But still have issues and have to take beta blockers.
Then there are my messed up teeth thanks to my Irish roots. They were such a mess with teeth growing in all the wrong places as my mouth was to small to accommodate them. We didn't have money so my moms friend who was a paster knew of a welfare program that would pay for braces which was good.
I had to have four teeth pulled before the braces and also a checkup with a regular dentist. That was the bad part. The dentist that was recommended ended up loosing his lisence years later. But he hollowed out all 8 of my molars 5 of them had to be pulled because of what he did. He also would not give me enough novocain I think he got off seeing me in pain. I was about 14 at the time I was terrified of dentist after that. I would like to say the story ended there but sadly it didn't. Fast forward two decades and another dentist did a root canal on cracked tooth (one of the 8 molars) and did it too deep and then used a chemical cement that causes nerve damage it touches the gums/tissues. I now have chronic pain in my mouth from nerve damage and the tooth was pulled anyway.
I have often thought the some thing, what did I do exactlly in my last life? I must have been one piece of work LOL. But then I look at the world stage and history and know how much worse it could be. In fact not having children was not a choice but in hind sight I am glad I did not reproduce. The world is not a nice place I would not even breed an animal and bring an animal into this world.
I wish I had the answers but I don't. Like you are doing just take it one day at time and do the best you can. And find something that brings you joy and invest your time in that.
Allie of
www.allienyc.com
My word Allie, you have certainly been through a hell of a lot in your life. I cannot even begin to imagine the pain you went through with that dentist, that must have been terrifying when you realised he'd been struck off and had already done the damage to your teeth.
DeleteI've heard of SIBO as I've been checked for it in the past. I've never heard of abdominal adhesions, I'm going to have a lot into that to get more info.
I think that sometimes about my life, I must have done something evil in a past life for me to warrant this life!
I always say that me not having children is not the be all and end all.
It's so important to take it one day at a time and find something you enjoy to keep your mind focused and find joy in x