I've been cooresponding with the friend of a friend that has just been diagnosed with Myleo Fibrosis (MF).
Warning health Science content to follow: For those that want, you can just snooze for a paragraph.
Remember that MF is the scarring over of the bone marrow and I had it before I had the Bone Marrow Transplant (BMT). My MF came on the heels of lots of warning and after I knew that I had some blood disorder.
Anyway it's come suddenly for her and she, rightly so, has lots and lots of questions and is concerned. In giving her answers from my life and situation I started on about being positive and wrote a lot about it lately and thought maybe I was just so full of myself that what I was saying was not true and may even not be what I was doing myself so I thought I would vet it through you my faithful network of supporters.
If its sounds like crap let me know.
I'm good I have no symptoms that I can see or feel except swollen ankles. Joyce and I are taking a break on the sunny coast at Maroochydore for a week. I've had tons of time to rest and recuperate but Joyce has been my carer and the bread winner for 11 months now and she's just tried. I have more to say about her further down in relation too your support.
It may very well just be that your body needs time to settle down. Remember that it took a while for you to get to this state. Even though you just found out about it your blood has been changing for months and maybe even years. I've had fibrous matter in my bone marrow for years and years. you can't expect to resolve it in a week. Remember that your body has some pretty amazing restorative powers. You need to give yourself permission to fall apart a bit. It's like you are grieving for the loss of your good health, you are not going crazy just dealing with some really shitty stuff and if anyone gets in your face about being brave and bucking up just tell them to fuck off for a bit!
You are doing the right stuff. Of course you are thinking about your future but keep in mind that you don't yet have all the information you will get. Don't be thinking that it's going to be this way for ever. YOU DON'T KNOW THAT. You need to be thinking about how your kids will want you to help them but you also need to find the strength to talk to them openly and get them on board to support you. You don't need to scare them but kids can be resilient too you know.
I totally understand how you are feeling. I had pretty much set my affairs in order at one time thinking that I might not make it through the BMT but I guess I just got calm and some acceptance came over me. But I always believed that my body could beat this, That I could be in the top percentile. And I guess this is where the positive comes in I decided that I was going to be the cool positive person and not the negative lay down and take it guy. It really helped that Bluey was so positive as well. She keep me grounded if I drifted too much.
Quick story: In the hospital the nurses are real careful to not get attached and they move around between patients a lot. You get the feeling that you are being nursed by an army and that in itself, helps a bit. One nurse that I had for many nights was having a bad shift and was in a dark mood when I happened to be having a bad time. She pretty much told me to get over myself and quit giving her a shitty time! I really thanked her later because she reminded me that it is not always about me.
I'm generally a positive guy and have been that way all my life. But I did some things to my thinking coming into the BMT and the two surgeries prior.
I'm a serious believer in behavior modification. You know.... that you CAN change your outlook and thinking by changing your behavior. This led to me developing several 'power of positive thinking' (POPT) ideas.
1. I started wearing Mambo and other Larry shirts and telling people that I was being bright on the outside so I would be bright on the inside. It turned out that it was fun to this as people laughed at my wild shirts. Joyce got going buying vintage shirts on ebay. The nurses watched to see what shirt I would wear. I talked about the "power of Positive couture". It became a focus of positiveness and no one talked about my stupid bone marrow.
2. I took pictures of all my family and friends and stuck them up on the walls and I spent a lot of time getting ready by scanning and printing out A4 size pictures. It kept me from focusing too much on the negative and reminded me about why It would be a good idea to stick around. to be with all these nice folk.
3. I wrote my blog because after all it IS all about me ;-0 I was spending way too much time talking about me so I made people read about it and discovered that I like to write! and that I got some real nice feedback about my writing and that I was so collected and calm. That really wasn't that true but I started to believe my own hype and it made me feel great!
4. You will need the support of your family and friends but you have got to know that people in your life won't know what to do with you! Some will not be there because they are too frightened of their own mortality. And you will get the other end where some friends will surge to the front and be so amazingly supportive that you will be overwhelmed with gratitude. The POINT is that you need to help people to figure this out. You need to direct how they should BE around you. The side benefits are that you come off being a great soul, they are put at ease and able to support you and the whole time you are taking your mind off your issues. This particular insight comes from Joyce.... did I mention that she is really smart. She is also a serious worry wart and some of my positiveness was that I was just trying to keep her buoyed up. But here is a really important note. You have to let people in! You cannot protect them from your issues and/or your pain and fear. If you stay closed to them you just magnify it for everyone. If you let them in you spend all your time thinking about them and not about yourself and that's good. I was worried that you were doing that a bit. You do need help but you have to help them ...to help you.
5. You have a great husband and kids, I suspect, but you are the only one inside that head of yours, baby, so it's up to you to get a grip!
6. If in doubt just fake it! If you pretend to be 'okay' and you act calm then eventually you will be calm and okay.
7. Don't worry it any of the above don't work, or stop working because you can try another angle and over time they may work again.
8. Don't worry if for a period of time nothing works and you just need to wail. This too will pass (you will have to take a breath sometime and drink some water to re-hydrate) and one of the above will start working again.
9. If any of the above seems like a crock of S**T then it probably is but it worked for me, so maybe it isn't.
10. Make a list like this ....you spend so much time thinking of things to write behind a number you forget what you are worried about anyway.
Remember that is a whole family thing and you need to get help to keep your head because your brain is one of the biggest tools you have to fight this with.
So does the above sound like the authentic me or is it just claptrap that made up today to hear myself talk?
Does anybody have any further illumination for my pal? If you don't want to go to the trouble of signing up to respond just email me and I'll post it for you. chrisolin22@hotmail.com
more later
Chris
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