The Reality of Chronic Illness

I’ve had a huge response to my last post.  I’d like to say a big thank you to everyone who has commented and for all your thoughts, hugs and prayers – they mean more than you can ever know.

As regular readers of my blog will know, I just tell it like it is.  Most of the time I manage to get through the days with at least some level of joy and gratitude.  But some times, I do not.  There are times when I’m just so flippin tired of the constant fight that I wonder what on earth the point to life is.  It’s one thing being sick for a month or two, or even a year or two, but I’ve lived with daily pain for 36 years now and some days I’ve just had enough.  I haven’t slept the night through for 21 years.  There is not a day which goes by where I don’t feel nauseous or dizzy.  I never have a clear head.  I am exhausted beyond any healthy person’s comprehension every nano second of every day.

I can’t eat what I want.  I can’t do what I want. I am without care of any kind.  I’m lonely.  I’m skint.  And it’s been like this for over two decades.

It’s absolutely normal to feel depressed at times.  I’ve never understood the insistence to be positive and perky every second of your life.  No offence to my American friends, but this pressure to never feel down and to always see the silver lining seems to be particularly strong in the States.  We Brits are much more realistic about life and are pretty good at moaning 😉 .  Holding everything in and pretending that all is fine when it clearly is not can lead to serious depression.

Someone commented that there are people worse off than me.  People with cancer or ALS.  I’m not sure that’s true.  I’ve had 3 Aunts and 1 Uncle die of cancer in recent years, so I know what they went through, but they were sick for 3 years then died.  Other people are sick for a few years then recover.  They don’t suffer with cancer for 40 years.  One of my neighbours lost half his leg, 8 fingers, half his nose and half his ear due to frost bite following a climbing accident.  But he’s not sick,  still works full time, has 4 kids, runs every day and still mountain climbs.  He has not had to spend a large portion of every one of the past 7,665 days in bed like me.  Another of my neighbours is in the end stages of Parkinsons Disease, a terrible illness which is robbing him of every bodily function.  But he’s 89 years old and until 5 years ago he was still digging the garden and driving his car having never suffered a days illness in his life.  He has children and grandchildren and a loving wife of 60 odd years.  He has memories of travels and adventures and a life well lived.  I wish I were that fortunate.

I’m sorry I scared some people talking about suicide.  But at times I do feel suicidal and I think, given my circumstances, that’s natural.  Fairly early on in my blogging I wrote a post about it which you can read here.  I also wrote a post about people’s differing attitudes to their circumstances which you can read here.  I might feel differently about my situation if I lived with a loving partner, or was being cared for by my parents, or had no money worries.  But I’m not in that position and my life is one relentless, exhausting struggle just to eat, bathe and get through the day.  You can’t know how you would cope living someone else’s life until you’ve walked a mile in their shoes.

I’m not going to apologise for writing yet another downbeat post.  This is my current reality.  Tomorrow, or next week, or next month, may be different but today sucks.  And to any of my readers whose today also sucks I send big hugs.  We’ll get through it together.

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15 thoughts on “The Reality of Chronic Illness

  1. glo

    Living in the states I have had to contend with the ever perky attitude. My boss in particular will bite my head off if I say anything negative about anything. I agree with you. I am far better off letting things out and not living in denial. I am doing much better since being diagnosed with MCAS and getting on the diet. I have been very lucky to be able to control this so easily. Before diagnosis though I also felt suicidal at times. I live alone except for my pets, I struggle financially and I suffered depression ,fatigue and all the other things that go with this for 10 years. Very frustrating illness as to others you look fine so they expect you to just quit whining as there is nothing wrong with you. My daughter also deals with this attitude. She has Fibromyalgia. I am sorry that you haven’t found anything to alleviate your symptoms. I can’t begin to imagine living with all that for so many years. These things are such a day at a time struggle. The frustration can be huge. What kept me going is just the fact that I’m pig headed plus I worried about who would take care of my pets. Your Bertie needs you.

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    1. bertieandme Post author

      Thanks for the comment Glo and know I hear you on the frustration. I’m sure Bertie’s saved my life on many occasions, as I worry too much what would happen to him if anything happened to me (and obviously my Mum as I’m her main carer). Jak x

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  2. Guenevere

    I am currently working on finding the fine balance between hope and despair–and part of that is being realistic about having EDS. One thing that is never helpful is comparison. Many people have illnesses or conditions that impact their lives, cause them pain and limit them. It’s enough to know that, and to know that I am one of them. I don’t need to measure who is suffering more or less than I am, because knowing that there is suffering is enough. I am grateful for what I can still do while sad about what I cannot. My father died of cancer and it was awful. I have EDS, and it’s awful. I know that people want to be helpful when they suggest that it could be worse, or look at so-and-so and how badly they have it, but for me that’s being in my wrong mind–my right mind doesn’t measure, it accepts the validity of everyone’s challenges. I’m sorry things go badly for you, and I understand how it makes you feel.

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  3. d

    Jak, you shouldn’t apologize for writing what is the truth. Chronic illness is soul crushing at times and is filled with a seemingly endless string of repetitive losses. I appreciate that you don’t candy-coat it and try to seem like it doesn’t have an impact. That is not why I read your blog. I read it because it is real, and I feel like there is someone else out there who really understands what it is like. I am very glad to know you are still around – I’ve thought about you a lot since your last post and hoped you would find a way to make it through another day. I also completely agree that depression is a normal reaction – who wouldn’t find themselves depressed at times when faced with the challenges you face and faced daily for years. Putting on the veneer of happiness is more about making others feel comfortable than it is about making ourselves feel better. I am glad that you are not willing to do that with your readers.

    d

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  4. Jill Jarvis

    I just want to give you a great big hug. Going through one of my own very rough patches at the moment and can empathise with everything you said. As we battle our way getting through every minute of today I hope tomorrow will have moments that are a bit better for all of us. Always thinking of you x

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  5. Zhaan

    I can so relate to this post. I am sorry you feel down and I do too right now. But no one wants to hear it. If people love you it makes them sad/worry to see you down. If they don’t love you then they just think you’re whining.

    I’m SO tired of the “someone has it worse than you” discussion. Of course if you look hard enough someone will have it worse than you! But it doesn’t diminish how you feel or make it any better! To me it’s incredibly insensitive to say that to someone who is suffering. It’s a way of saying “buck up and stop whining” basically dismissing how they feel. I don’t know if people are just clueless or don’t care or both.

    I agree with you about the US and the pressure to be upbeat all the time. Not to mention I live in the Bible belt of the US. Which means if you are sick/depressed, you must not have faith in God on top of it so you’re failing all the way around!

    Thank you for being honest. I really appreciate it. It does help to know we’re all alike on some fundamental level.

    Zhaan
    MCAS and EDS

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    1. bertieandme Post author

      I hear you Zhaan. I either get the “at least you don’t have cancer” statement, or the “I know exactly how you feel” statement when the other person has a cold which is going to clear up in the next week. They both do my head in :-/ Jak x

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  6. kneillbc

    Jak, I went back and read the comments etc. I know you know that everyone is trying to be helpful, but the American ‘pretend nothing is wrong’ or ‘somebody always has it worse than you’ attitudes are SO irritating! The ridiculous facades that many Americans insist on perpetuating make me want to reach through the wires and smack people upside the head!!!! I watch television shows where people go to look at houses- and it’s so fascinating- a bit like watching animal behavior at the zoo. They are more concerned with granite counter tops than if the faucet works!?! The location of the house is usually described in terms of how posh the neighbourhood is, and the status of the local school, rather than how close it is to shops, to the local school, to parks, to amenities.
    The focus on appearance in general is vital to Americans. When they tour hospitals, the talk is about how nicely decorated the room is. Personally, a hospital room- I don’t care what it looks like. I really care how clean it is. And nice soft cushy couches, and luxurious curtains make for GERMS! You can’t santize upholstery! To my eyes, very silly. For many Americans though, that first visual appearance of something is the important one. How can it be a good hospital if it doesn’t look nice? (I don’t understand it, but understanding that about many Americans is key). I think that this aspect of American culture is changing, as it has to eventually do. Facades must have something to hold them up. Enlightened Americans are pushing back against the ‘appearance us everything’ attitude, but it’s an uphill battle. Of course, as a Canadian, I’m very pleased to be a Canadian, and I fit the stereotype practical-say-it-like-it-is-but-very-politely persona. As that, I won’t judge- I personally prefer to try to live more authentically, but if it works for you…… I also think I have amazing neighbors- but how they live is very, very different.
    That said, it does a huge disservice to someone to ask them to pretend to be something that they are not, or to feel something that they don’t. For heavens sakes, there are lots of Americans who think you can ‘will’ your way to a different sexuality- some politicians even think that you can ‘will’ yourself out of being pregnant. (!) This is different than a legitimate psychological technique of ‘living what you want’, whereby you practice certain habits until they become ingrained. ‘Pretend to be not-depressed/straight/gay/male/female/pregnant/not pregnant….’ doesn’t work. And telling someone who is on the floor because they fell out of their wheelchair to ‘buck up’ doesn’t work either. If you can walk, you do. People don’t choose to be depressed. People can choose to be unhappy, but they don’t choose to be depressed. In fact, I would argue that anybody who has a chronic illness who doesn’t admit to some level of despair, depression, and so forth…I think they are in denial. I think I’m doing pretty well psychologically. But HELLOOOO! If course I have contemplated the ‘what if I couldn’t live with the pain anymore…’, or ‘what if nobody was relying on me.’ thoughts. Anybody with a chronic illness who hasn’t contemplated that- they are pushing thoughts out, which is never a good plan…those thoughts come back, even bigger, with mean dogs…
    You go on being you! By owning those feelings, you conquer them. (Good God, I’m verbose today, aren’t I? I’ll shut up now and let you have your blog back..sorry.)
    Karen

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    1. bertieandme Post author

      You carry on Karen, I’m enjoying your comments immensely! 🙂

      I agree with everything you’ve said. Not that I’m an expert on American culture, but I do watch way too much state side reality TV than is good for me 😉

      British culture is much more real it seems to me. That’s why I get so pissed off with comments about my ‘harsh’ personality. You have NO CLUE how much I tone down my actual personality on my blog – if I wrote on here how I speak in real life my American followers would keel over in shock 😉

      We Brits are much more vocal about the negative aspects of life. Australians don’t call us “whinging Poms” for nothing lol! And on the whole we don’t have the religious gubbins to deal with, which I think colours a lot of attitudes in America.

      I’m at the stage now where if someone leaves a shitty comment on my blog I just tell them to bugger off 😉 Or I “out” the comment in a blog post for the whole world to read. It seems to shut the worst offenders up!

      Jak x

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  7. Elizabeth Milo

    Exactly!! To all of this! I couldn’t agree with you more. I find the insistence on/pushing of positivity completely irrational and bizarre. I also find it incomprehensibly selfish for people to not want to hear about suicidal thoughts. When I’m feeling suicidal (which happens every single time my symptoms are really bad), the thing I need to do most is talk about it. Because I don’t want to die, but I don’t want to live. I also completely agree with what you said about other illnesses. I cannot truly compare because I’ve not walked in other people’s shoes, but, with ME, you can’t help but have those thoughts because, for me, it is the fundamental energy deficit for every working system in your body that is the killer. Take my legs, immobilise me, give me a terminal disease with a vicious treatment and a probable end date, but don’t make me live every day for years without the ability to power my mind, as well as my internal organs and nervous system, as well as my limbs. If I cannot be physically active, I would give ANYTHING to be pain free, able to take drugs or, above all else, mentally active… converse, read, write and talk for as many hours as I want… I’ll stop. Huge love to you. 💘

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