Spoon theory

The spoon theory came about years ago by a woman called Christine who suffers from Lupus.  She started this theory to explain to a friend how it is like to deal with chronic illnesses on a daily basis. Christine grabbed a handful of spoons and used the spoons to represent our energy. She had grabbed 12 spoons for someone who has chronic illnesses. Anyone without any illnesses have plenty of spoons like hundreds and thousands of spoons. 

For every task we do every day requires energy so each task uses a spoon. So Christine explained to her friend what she done on an average day and took a spoon away. When all the spoons are gone the only way of requiring more spoons is resting and waiting to regenerate more spoons. Due to this anyone with chronic illnesses will ration their spoons throughout the day. Most people do not have time to rest in the middle of the day so we have to ration them throughout the day instead of using them all up in the morning as no spoons means no energy. On the other hand if someone without a chronic illness were to go hard in the morning they might be a bit tired or they might be fine. In most cases they are able to continue with the rest of their day because they have plenty of spoons to get through the day. They might need some extra coffee but life is still able to carry on. Like Christine I am careful with my spoons and try not to waste them as I have limited spoons some more than others as I have issues with sleeping.

Well this is the spoon theory a concept developed my Christine Misbranding and referenced to by many people who suffer from chronic or invisible illnesses. Many people living with conditions such fibromyalgia, Crohn’s disease, anxiety and depression. 

Living with chronic illnesses can be deceiving as we can appear “fine” as we often do not display easily spotted physical symptoms. It can be tough for everyone involved with that person like friends, family and colleagues to understand why they bail out on happy hour or cannot drive long distances for visiting or take a lot of sick days. 

I suffer from backache, joint pains and abdominal pain. They are triggered by several things like stress, weather changes, not taking a proper rest or an illness flaring up like my fibromyalgia, Crohn’s disease or my IBS.

Many days I try to operate with minor pains in my back or joints and I have to take paracetamol or over the counter codeine and hope the pain goes away. Other days the pain is worse and the pain medication does not work so I have to hope lying down on the sofa or in bed works. 

As a full time mum and also working full time with no friends or family that lives on my doorstep to help out as it is just myself and Alisha now in the house it does disrupt life for both of us. The days I am in pain and need to go places we need to leave earlier as I cannot walk fast like I normally do. The housework gets threw on the back burner as I have no energy to do it myself. I might not be able to take Alisha places even if I make a promise to her that we are going somewhere like the cinema. The television ends up being our friend and that is where we stay unless I need to get up and make us food. There are days I will not be able to do much but lie on the sofa and rest. Because of this I must pace myself throughout the day. If I try to do too many things I run out of energy and I have to rest up. 

At home my work load piles up while I am sick. I get the basics done around the house. The laundry I hate with a passion so I literally get it washed and dried but it usually never gets folded unless I have visitors coming or ironed if I really need to get it ironed. 

I may not look sick but I do have varying levels of dishevelled at times because of a 3 year old, so it is nothing too out of ordinary there. To everyone, people who suffer with chronic and invisible illnesses can appear fine and it can be very hard to understand why we cancel plans or why they always complaining about being tired. The spoon theory which Christine put together to explain to her friend provides everyone a context to share with people in our lives so that they have a much clearer picture of what we have to deal with on a daily basis.

Colonoscopy results

Well I had my colonoscopy on just gas and air. I was told by everyone in the room I was mad for not getting sedated due to the scar tissue in my descending and transverse colon from back in 2012/13 where they found it originally when I was first diagnosed with Crohn’s Colitis. But if I was sedated I would have to be kept overnight as I had no one to collect me from the hospital or stay with me overnight or look after my little girl so I decided I would not be sedated and just have gas and air. I was allowed to take paracetamol before my procedure so it was in my system. I think it had helped this time too as it was not as bad as last time when I was on gas and air when I last had my scope back in 2015 when Alisha was 6mths old and she would only come to me during the night not her dad as at that time she never slept through the night.

From what he could see he could see that my Crohn’s has gone from the descending and transverse colon into the caecum and terminal ileum and a bit further up but because a colonoscopy can only go so far up he would need me to attend my MRI scan at the end of the month to see how far up it has gone into my small bowel. But he has said I have Crohn’s ileitis and it is in a flare-up at the moment. 

Well the decision of my treatment has been given back to my consultant as I had got one of his colleagues doing my scope. His suggestions he has put in his report and he suggests infliximab and something to go along side it which is aimed at my small intestine as my Crohn’s from what he could see is mainly all in my ileum and a bit in my caecum in the large bowel where the small bowel connects with the large bowel and no longer in the colon. He did say at the end I would have to wait for my appointment in June for my consultants decision unless he contacts me before then if he gets my MRI results when I have it in a few weeks time.

From having being sedated for my gastroscopy and colonoscopy back in 2013 to diagnose me with Crohn’s disease and then going through it twice unsedated with only gas and air I have to say it is up to you in which way you choose as it is you going through the procedure. If I was to go through another one I would choose gas and air as you have no restrictions afterwards unless you have a load of biospies you might be in a bit more pain than if you had no biospies taken like I had none taken this time round as they already knew my diagnosis so to safe me extra pain and bleeding he decided not to do any and just take a lot of pictures as evidence of where my Crohn’s disease is and if it was flaring.

If you have any questions about anything you can always email me or leave a comment.

D-day

Well today is D-day. I am having my colonoscopy. I am having it done without sedation. All the nurses think I am hardcore as I am doing it only on gas and air and maybe some pain relief via IV. I am waiting to go in for my procedure now so I will let you all know what happens later on.

“Worst case scenario”

In my last post I mentioned about getting an operation being the worst case scenario. This is always what my IBD team has said to me when I have a scope done or they change my medication. I have many friends who suffer from Crohn’s and Colitis who have had to have a stoma either an ileostomy or a colostomy. The majority of my friends have never said it is the worst case scenario as they have got their life back. The only thing they have to worry about is the bag popping off and soiling their clothes which is rare if you have a bag that suits you and you use all the special seals and bonds to keep the bag stuck to your skin. Or the bag fills up too quick that they need to run and find a toilet to empty their bag. 

I am in the middle of the biggest flare up since I was diagnosed in April 2013. I have been late once to work because I needed to go toilet yet again before I left the house then got stuck in heavy traffic behind a road traffic accident on the way I go to work. I have also soiled myself on the way to work too which I am not happy about but I was prepared that day as I was carrying a spare change of work clothes. Now this is what the IBD teams should be saying is the worst case scenario not getting a life changing operation.

I have come up with five of the worst case scenarios for anyone with IBD.

1.  NO toilet paper …this is definitely number one as it is the worst scenario you can have happen. If you are at home you might have a massive stash of toilet paper in the house but what if you run out completely or you are using a public toilet and there is no toilet paper at all in the cubicle. A massive issue is at hand how are you going to wipe your bum

2.  NO toilets … either the establishment has no toilet or there is a queue of other customers waiting to use the toilet. Either way if you are needing the toilet urgently it is going to end in an accident.

3.  Dirty toilets … from making a mess yourself and having to clean it up before the next user or the previous person did not clean it before they left and there has been no toilet checks for a while by the cleaning staff it can be a horrible task to clean the toilet really quickly if you are in a rush out and about or even just at a friend’s house.

4.  Clogged toilet … this is a really common thing to happen to anyone. The best way to prevent this from happening is to flush the toilet after you have finished doing your business then after you have finished wiping. If the toilet water do not go down do not flush again as it is a sign that the toilet will overflow as it is clogged up already.

5.  Bathroom accident … this can happen to anyone of us as it can just come on all of a sudden that we need to run to the toilet and we cannot always get there on time to use the bathroom. If you do not have an emergency kit already it is worth the 10minutes or so to put one together with spare underwear, wipes, gloves and other bits and pieces you might need to use if you have an accident. If you look further down my blog I have a post regarding emergency kits. Mine is usually with me and I have one also for my little girl as she is no longer in nappies and so far it has only been mummy who has had to use the emergency kit when out and about if we go shopping or out on a little trip to town.