This post is for all the parents who don’t give up when they are ill, the schoolkids who refuse to fail, the employed who for themselves would prefer to stay that way but are made to feel they aren’t as ill as others because they are unable too do these things. That definitely reads like as song by Fallout Boy or the like doesn’t it? No not every chronically sick person feels it is a competition to who is the sickest, well practically none really as we are all fighting our own fight. But that doesn’t stop the odd negative sod ruining it for the rest of the community.
I have been a sick schoolkid worried my GCSE grades were going to suck (they surprisingly didn’t) I spent a LOT of time admitted in hospital or relapsing at home. In fact I don’t ever remember being in remission at that time but I guess when it’s ALL you have ever known you get on with it. But was told during my A-levels that my attendance was too poor to be allowed to continue even though I was averaging B’s on my assignments. Shame the head of year who knew my circumstances left and I lost some fight in me with regards to my education and just went for a job.
I remember doing work experience when I was about 14 years old and I got a phone call from my Mam saying there was something off with my bloods and I was on Azathioprine at the time. I refused to leave and she must have called my Grandad because the next thing I know is I am being summoned to the reception area of the nursing home and practically fire lifted out of the building into the car then onto the hospital for 2 weeks! In hindsight it was pretty important to have just gone in really.
I have been pretty much employed since I was 16 with only 2 years of unemployment one year at 18 and the other at 23. Regardless of how sick I was I am proud to say I have never skived from work. Although when you are legitimately sick I honestly don’t know why you would, because someone somewhere down the line is going to question you being chronically sick so why would you give someone ammunition? I have learnt the hard way with regards to “prove” my sickness but as long as you know the companies policies and procedures and above all are honest with them you are often going to be fine. But just know that there are plenty of agencies that will help you out if you feel that you are being treat unfairly, just document everything.
Just before my ostomy surgery was the worst I had ever been; I would crawl around at work, be unable to take pain relief because of the work I am in and be in a vicious cycle of not getting the proper sleep I needed because I refused to put Ra-Ra in nursery for longer than the couple of hours between the changeover for mine and 00Steve’s shifts. I constantly told myself I had been through worse and that I could cope with work and I was damned if someone else was looking after my child. But I would go sit at my parents or my Nanna’s so I at least had some company and Ra-Ra loves all her grandparent’s.
I have had two different employers with both of my IBD surgeries and to be fair with my actual surgeries they were both very supportive and knew that my sickness absences would be reduced significantly which they were for a good long time! But I have found “well” people or the people tucked away in an office that have their checklists will often begin to think that the surgery should be full on cure with no leeway. I obviously don’t have Crohns but I know that from the friends I have with the disease; that surgery is most definitely not a cure but has a good chance of getting you into remission, sadly this isn’t always the case.
I may like other parents moan about Ra-Ra or being pregnant because it can be frustrating at times, but I would never change it for the world. There are too many people that palm their kids off in childcare so they can have their “me” time and that is parents who are perfectly healthy. It is obviously different for sick parents, but even when I was fully struggling to even crawl around the floor to ensure Ra-Ra was cared for just the same way as when I was well, we just had more cuddle time! It kills me every time I remember having to say “not now sweetheart” or “you have to wait until Daddy gets home”, but for me it was still better than wishing my time away from her or shipping her off to childcare, family or friends. I just have to thank my lucky stars that she was still quite little when I was at my worst and she may not remember it when she grows up.
I am not a fan of being pregnant but I am so grateful that I have managed to conceive after my stoma surgery as my surgeon said he wouldn’t be able to guarantee it with all of my scar tissue and in case my organs essentially stuck together. But I know plenty of women who just don’t like being pregnant but love the fact they are going to be a mum. With Ra-Ra it was the hiccups *shudder* but I also had a horrible pregnancy as nobody had realised my pouch was in flare. But hey ho she was born a bit early but perfectly healthy and this time round I think Button is bigger than her and likes to twist rather than kick. I am definitely looking forward to being a mum of two even if it does terrify me at how I will cope! Someone once told me love is all a child needs, I agree somewhat with that but being there for a child and parental interaction is just as important as hugs.
I have like pretty much anyone with an invisible illness have heard the “but you don’t look sick”, no I probably don’t unless I’m in hospital because I swear I must wear every piece of make up I own!! But it is when the odd person who relishes in making others feel like they aren’t really sick or that sickness is a competition that really grinds on me. I have had “but you are too young to be sick”, “at least you can manage to go to work”, “I just need some peace and quiet from my kids don’t you?” and “I obviously am more sick than you are”. I have never understood why people think like that, people are probably sicker than I was since I can say other than some minor issues I am the healthiest I have ever been. But I know loads of people who are still sick and don’t feel the need to make it into a competition, or find someway of carrying on their education, or make allowances for work as some are able to swap to light duties or work from home and do an absurdly good job with their children.
I do believe we all deserve a few woe is me moments, because what we go through is hard really sometimes, really hard. But this is why we are some of the best people empathy wise, we can see the light at the end of the tunnel when it’s hard for others. It can be made easier to deal with when you set little goals as it can increase your confidence and or personal positivity. Which is always a good thing whether you are well or not.
So the point really of my post/waffling is we all suffer in different ways or can tolerate things better or worse than others. I have a high pain threshold but nip or prod me and I am in agony! I believe if more people spent time helping others that were struggling as it isn’t always a case of stiff upper lip and all that there would be less people out there to be a legitimate pain in the old rear end OR able to make others feel like they shouldn’t be struggling. Just because I and others like me can do things others can’t doesn’t mean we are or were any less sick than others. We are all are individuals and our diseases or illnesses affect us differently which in turn makes it harder to treat *shakes fist*