Playing The Cards You’re Dealt

A very well written blog from a fellow IBD survivor.

 

“Life does not hand you breaks. Life does not give you what you think you are owed. It will get better is something I get told a lot. Often it either doesn’t, or it does but not to the extent you ne…”

Source: Playing The Cards You’re Dealt

 

 

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Positive NHS Stories

I’m never sure how to start posts. Increasingly I have been wondering about trying to be more involved with the world beyond my immediate family and friends. A lot happens in the world which makes you feel quite helpless but you want to try to make a difference. Of the many things which I feel I want to try to make a difference is the British National Health Service. There are always negative stories about the NHS, proposals for privatisation, talk of various cuts and increasing stresses on nurses, doctors and hospital staff. It is very hard to keep up with it all.

I do think that health care should be freely accessible and that the government should strive to keep the NHS away from being privatised. Whether someone is treated by the health service should not be based primarily for their ability to pay for care. But this is starting to get into territory which I am not familiar with and don’t fully understand. I am not going to try to set out a plan for how to improve the NHS.

What I mainly what to do is encourage people to spread positive NHS stories. I think it’s a good place to start. Whatever your positive story is please share it for as many people to see as possible. Whether it is staff being friendly and helpful, or treatment that saved your life, share it to show that the NHS is not a failing service.

The NHS brought me into this world, kept me healthy as a child, saved my life when I was 19 and gave me back my life when I was 25. The most I have had to pay for is prescription medication. I have not had to pay for surgery, staying in hospital and various procedures and examinations. I have met some amazing doctors, nurses and other people working in the NHS, they do a great job and it makes me really angry that the government and media seems to try it’s best to make their jobs even harder by focusing on negatives, cutting funding and increasing work hours.

I can’t think of a catchier title. But please share your positive, uplifting, happy, inspiring and good news NHS stories.

Rio 2016

I’ve been meaning to write something for ages, but I either haven’t made the time or wasn’t sure what to write. It has been a long time since I regularly posted anything and wasn’t really sure what to say. At times I know what I want to say but don’t know how to start and don’t write because I worry people think I might be being big headed and arrogant. Thinking that because I have access to a computer and post stuff online my opinion matters or is of some significance. Some of what I write is for others and some of what I write is for me. If I write it down then it is out there for other people to read and I might actually do some of the things I want to rather than putting them to the back of my mind and ignoring them. Then I also want to show people that you can over come difficulties. If I can get by then so can you. The main reason I started this blog was to help myself deal with illness. If I could talk about it openly then I could deal with it in a positive way. Yet I don’t want that to be what defines me in other people’s eyes. Sometimes I mention them other times I don’t. Of course most blog posts mention it and I share things about meningitis and inflamimaory bowel disease (IBD), so as hard as I try they are a part of my life. I should not be afraid to talk about them because if I was then the illnesses would have won.

Anyway so what am I trying to say. In October it will be four years since I had my large intestine removed. In March next year it’ll be ten years since I had meningitis (I can’t believe I still need to look up how to spell that!). So the 2016 Rio Olympics finished recently. I didn’t get much if a chance to watch them this year. Yet it was still inspiring when you see what people are able to achieve. I am also looking forward to the paralympics. I love the song that Channel Four are using for their ad campaign. It literally brings tears to my eyes. It has such a wonderful and simple message, if you think you can do it, then you can do it! “Yes I can!”

Four years ago I was able to watch the Olympics and Paralympics as I wasn’t really able to leave the house. I did try to get out and about at times. This was sometimes a mistake as I really wasn’t up to it, but I was determined to not spend all my time feeling imprisoned by a disease (sorry if that sounds a little melodramatic). The wonderful irony, one of the biggest sporting events in the world was taking place in my home city and I could barely leave the house. It was great to be able to watch so much on TV but it would have been better to be able to see an event in the flesh so to speak.

So the Olympics had some amazing stories of athletes overcoming adversity. I am sure there are many more athletes with inspring stories than the ones I mention. Both Siobhan-Marie O’Connor and Kathleen Baker suffer from IBD and they won medals. At fifteen Chris Mears had a ruptured spleen which caused him to be put in a coma and suffer a 7-hour seizure. Their stories are great and I have no doubt the Paralympics will have even more.

I have achieved a few things over the past four years, most recently I finally got round to competing in an endurance event this year. I did my intellectual challenge of finishing my masters so I got round to a physical challenge. Ever since I had meningitis I wanted to do something like run a marathon. I came close in 2010 when I was going to run the Munich marathon with my brother and sister, but Ulcerative colitis (UC) got me and prevented me from doing that. So UC got a victory over me in that case. In July this year I swam a 1/2 mile open water swim in Royal Victoria Dock. I know not that great a distance but considering I was very anemic and had only had a month of proper training, I think it was a pretty good achievement. I really was so proud of myself when I finished. Unfortunately I wasn’t allowed to fully enjoy that moment of personal triumph. I did it in 25 minutes and 19 seconds and was 70th I have no idea how many people were taking part. Again not too bad and something I feel justified in being proud of especially when a few days before hand I was told I had 6.7 grams of hemoglobin per deciliter of blood and a healthy level is 13.5 grams of hemoglobin per deciliter (135 grams per liter) of blood for men.

I would like to be able to build on this. More intellectual and physical challenges.

There is more I would like to say but as usual when I start writing I ramble. I’ll save the rest for other posts, which will hopefully be shorter.

To paraphrase a quote, pursue what gives your life meaning and deal with the stress as it comes.

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The start of my medal collection

 

Three Years On

Cornish Sunset

Cornish Sunset

So on 30th October 2012 I had my large intestine removed, a J-pouch formed from the base of my small intestine and a temporary stoma. On 27th November 2012 I had the temporary stoma reversed and my J-pouch put to the test. Three years on I sometimes forget what has happened to me. I have mixed feelings about this. It is a great testament to my recovery and the fantastic job the surgeons did. At the same time it makes me complacent and I should remember that my insides are different to other peoples. There has been the occasional hiccup (as in bowel hiccup), but my quality of life is amazing compared to what it was.

My body has healed so well. You can barely see any scaring. I have four keyhole scars on my abdomen and two larger scars, one under my belly button and another on my right hand side where the stoma was. I can still feel these scars but you can barely see them, being very hairy helps with this. I am able to do a very physically intensive job and barely have any problems. I may sometimes have a long walk to a toilet but I have control and warning now.

3 years on and it's hard to see any scars.

3 years on and it’s hard to see any scars.

What am I trying to say with this post other than “oh look at me, three years ago I was a mess, now I have a life”. I may be very busy but I would rather be busy and struggle to fit everything I need or want to do into my day rather than be too ill to have a life or a meaningful existence.

Everyone has problems but the crucial thing is how you deal with them. Do you tackle them and overcome these problems or hope that they will go away. People may help or try to help you but you are the most important person in dealing with your problems. Once you have acknowledged the issue you can start addressing it. I was fortunate in that most of the serious problems I have had (whether physical or mental), have had an identifiable cause which I have been able to address. It is not always easy to deal with the problem but you need to persevere. Life isn’t easy that part of the beauty of it. It would be very boring if it was easy.  If you are lucky there will be a quick fix. If it isn’t a quick fix it’ll take determination, there will be good days and bad days, use these to keep you going. Learn from the good and the bad and don’t give up.

“A fool is someone who goes through a negative experience and doesn’t learn from it.” I first heard this quoted by Richard Hawley. I don’t know if he heard it somewhere else but I will attribute it to him. I try not to be a fool but sometimes I am.

PS I managed to get through a whole blog post and barely referred to poo. Also sorry about the picture…at least you don’t have to see my face.

The truth about pooping in a bag is that it can save lives

This is a great article about a persons experience with Crohn’s disease and having an ileostomy:

http://themighty.com/2015/09/the-truth-about-pooping-1n-a-bag/

“People who have ostomies all had serious medical conditions or injuries they didn’t choose, and surgery became an option for a better life, or in some cases to save a life. Remember that. Don’t judge people who have had to go through so much and are dealing with it because they have to.”
At some point I should start writing again about my own experience but I keep saying I don’t have time. It would be more accurate to say that I am not organising my time well enough to write anything.

Ostomies do save your life and make your quality of life so much better. I only had to live with a ileostomy for a month but I feel I was mentally ready for it. I had had such a bad experience with ulcerative colitis that the prospect of pooing into a bad seemed much better than what I had been dealing with. Almost three years on (living with a j-pouch) I sometimes forget that I have one. It doesn’t seem like three years. I have been able to do things I never could have done if I was still suffering from UC. I have had to use a few too many portaloos than I would like but such is the life of a field archaeologist.

Whatever troubles you may experience, they are only fleeting. Human have an amazing capacity to overcome adversity, whether it is physical, mental and be better off afterwards. That’s a bit of a rubbish end. I’m tired and can’t think of a better positive message to end on

To the woman who tutted at me using the disabled toilets…

A very good description of problems faced by people with internal pouches. I haven’t posted anything in quite some time so I thought I would promote a very well written post by someone else.

So Bad Ass

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the…

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