I Won't Apologize for Having Fun While Chronically ill

[StarOnTheTree]

This came up on my Facebook today. I found it interesting and though that some of you might too.

Why I won't apologize for having fun

I have fibromyalgia and arthritis and I can really identify with the article. I wish people would understand that if I do anything 'normal' it doesn't mean that I'm not ill.

I do fun things knowing that I'm going to 'pay' for doing them. People see me doing stuff but not the suffering afterwards and I know that some people then think that I'm not that ill

[Unescorted]

We had a fantastic friend who pushed the boundaries when she was ill. She has inspired so many people to be the best they can be, enjoy any moment they can and not give a flying fuck about what anyone else thinks ..RIP Jen. we miss you and thank you for every moment you were with us.

Star it is their narrow minded problem. Take every second & live it like it to the full. It is your life, make it the way you want it to. xxx

[StarOnTheTree]

Thanks Unescorted

You seem like a lovely person and your friend sounds fantastic. You obviously thought a lot about her

[Hedgehog80]

I love this article it sums up what we go through. People take a glance and think we are 'fine'. If only they saw 'behind the scenes'.....

Just got back from a few days break. The sheer amount of planning that went into it was mind blowing. Packing all the medications needed and just in case items...planning each day with military precision....checking blood sugars all the time via cgm.....watching one dc for signs of fainting...planning toilet stops due to 2 dcs having IBS....checking all food for the dc with severe allergies.....going on play equipment with dcs in case they fell and dislocated.....trying to pace everyone to avoid (and failing) burnout and collapse.....being woken from our comatose sleep by medical alarms and having to deal with numerous nighttime issues requiring treatment and hoping we are awake enough to not make a mistake.....weighing up the risk/benefit of leaving eldest dd alone in chalet to sleep v staying in but other dcs missing out on stuff or one of us staying behind then the other having to do trips back and forth as dcs need 1:1

All people see is a snapshot and think we are fine when we are so far removed from fine you wouldn't believe it. Been home over 24 hours and me and dh are shattered beyond belief. To look at our holiday photos though you wouldn't guess and because of this far too many people pass judgement :(

[starsinyourpies]

My DSis went on a super holiday of a lifetime with her DH despite gasps of horror from the many consultants etc about risks of flying given how ill she was. She swam with turtles (with help) and had an amazing time. She died six weeks after she got back, I'm bloody glad she and her DH had that special time together.

[SpecialAgentFreyPie]

I have chronic pain.By God do I relate!

The 'one' that hurt me the most was the bit of gossip that I was 'trying to keep my DH's attention solely on me because of my insecurities' by needing his support.

That one cut deep.

[honeysucklejasmine]

Excellent article.

[OrlandaFuriosa]

Agreed.

Minor eg, Can't recall why I was off work, recovering from radio, I think, and went to a half hour lunchtime concert before going home. Elderly woman attacked me and told me I was the epitome of evil in our society by not being back at work.

[Simmi1]

Me too! I have a chronic condition which came on suddenly nearly a year ago. However I am guilty of looking a fb and being jealous of friends who all seem to be living an active healthy life and resenting the fact that this has happened to me. When I do go out I do often check in on fb and then get similar comments of how I seem fine. But I'm not fine at all.

[SpecialAgentFreyPie]

Simmi I totally understand. It's why now, when the terrible insomnia hits I come on MN rather than FB, because I just get jealous and distraught!

[Simmi1]

Glad to hear I'm not alone although not glad you're ill SpecialAgent. I also get jealous when I see old people out jogging and doing active things with grandchildren etc. I'm only 40 with two small kids and being ill has really ruined things for me. It seems everyone else gets ill, then gets better. That's what I thought when I first got ill but one year on I'm still battling

[SpecialAgentFreyPie]

I know what you mean. it's like a misery loves company but wishes they didn't have any company because no one deserves it.

Is what you have treatable? I mean if it's just come on? I understand that too. I have days I can barely walk from pain. Luckily my DH is a giant over 6'5 so I can hitch a ride

[redannie118]

I was diagnosed with systemic sclerosis last year. What always gets me are the people who think I'm "lucky"to work part time and have days where I dont get out of bed. No,lucky was being able to play tennis with my kids,walk my dogs in the country, dance all night with my friends and go away for the weekend,like I used to just a year ago. Lucky is having friends who still want to speak to you and not desert you because now you're boring. Lucky is being a normal 43 year old woman who doesn't live with chronic pain and walk with a mobility aid. I love to go to gigs and listen to live music,it's my one great release now,and if you don't like that you can feck off !!

[Simmi1]

Sorry to hear that redannie. I know exactly how you feel - it's all the little things you take for granted that hurts so much when taken away from you. You also start to realise how little the medical profession know about certain conditions. I've spent a fortune on alternative treatments etc but am still suffering

[Quietlygoingmad67]

My dd2 had a chronic illness and is unable to attend school, has no friends left and leaves the house once a month but when she does (she looks normal) and nobody sees the next two days spent in bed unable to sit up, eat or talk! It's so frustrating and ignorant of people to assume she is okay because she has managed to wash her hair and put on some makeup to manage 2 hours out of the house once a month!! Sorry I've ranted - but I'm stressed and heartbroken

[AnnieOnnieMouse]

I saw that, too.
Yesterday I drove to meet some friends nearly 30 miles away. I have been a wreck all day today and no chance of much sleep again tonight. Yet I, too am 'lucky' I don't have to go out to work.

[RockinHippy]

I spotted this on Faceache too & I also relate to it for both myself & daughter

Quietly, your post sounds so family, that was my daughter too a few months back - she was even getting accused of faking it by her peers, because she loves making videos & painted on a smile to carry on making them as she could do little else, they didn't see how hard it was otherwise or how much she paid for trying. It was heartbreaking to see how much it hurt her & how quickly most of her friends disappeared

For myself, I have a list of diagnosis too & no longer care what others think, lives hard enough without giving head space to the thoughts of thoughtless, ignorant, people.

Thankfully we found the answer for her & shes much better than she was & goes back to school soon after 18 months of mostly being bedridden, though it was a battle to get the medics to listen, they thankfully did in the end

I'm leaving this link here on the off chance that it might help somebody else as much as it helped my DD & hopefully in time, me too...

Useful info for chronic ill health

[Kinderegg50]

I have a couple of horrible autoimmune diseases. A really debilitating one came on just after I had my little boy. It has turned my life upside down and then some. I stopped working eventually last year, I'm now also a single parent. I find life really scary now tbh. Are any of you sick and lone parents? It's so isolating. I don't tell friends the half of it as I'm so worried about losing people now I am so isolated with the health issues. I take my son out alot but drag myself around in severe pain and feeling sick to my stomach and exhausted beyond imagination. I want to tell people how ill I actually feel but i daren't.

[StarOnTheTree]

I've realised that I try and justify me doing things whilst I'm doing them, e.g. making sure that people know I'll need to stay in bed the next day. I'm going to stop doing that now. I don't need to justify anything and I can do whatever I want if I'm capable of doing it.

I prefer to live and suffer rather than keep things on an even keel so I'd rather do the activity and pay the price than not do anything at all.

Kinder I'm a lone parent too and have been since I became ill 8 years ago, no support network at all When I first became ill DD3 was only 18 months so I recognise this I take my son out a lot but drag myself around in severe pain and feeling sick to my stomach and exhausted beyond imagination It's so much easier now that DD3 is 9 and can amuse/look after herself so at least between doing outings/activities with her I can go to bed and rest. I really feel for you

[RockinHippy]

Kinder, if you qualify for DLA/PIP, which it sounds like you should, then you can get free nursery time or a nannies help - i gave in & did this when DD was tiny, she went to nursery twice a week on alternate days, could have gone more, or however it works for you - but been able to rest when she was there really helped me pace myself, so I coped much better with taking her out on her none nursery days

DH was home at weekends to help, so easier for me, but nursery was great for socialising her too & she loved it, in your situation I might have felt more days would help more

[IreallyKNOWiamright]

I get this. I've got chronic illness and I'm so sick of people including my in laws who say well you look fine to me. A picture is a picture, but no one will ever understand what it's like to have sleepless nights because of pain. The feeling of failure because you feel all you've done is the dishwasher and cook. The feeling of failure when you have to go and go to bed before your children. No one understands. chin up and be positive are other ones that wind me up too.i totally get the toilet plan too with the IBS.