It's what's left behind that counts. The new you
Hello!
It's been a couple of months since I blogged for you! I've tried to write a couple of times but I kept thinking I had nothing to say! A miracle I know!! Spend a year putting down all my thoughts and then I run out!! hahah... bad luck.. 'cos not quite!
In terms of Morris and my head it's been a really good time. I have taken a few really important steps forward. I've finally realised a lot of things! It's like I'm growing!
Ive really pushed this! : There's doing things because you want to get fit again, because you want to be happy and independent, and then there's blatantly pushing the boundaries in a bid to deny anything has happened and to try and tell everyone else you're fine. Well... how stupid! I saw the doctor the other day and she said "have you been pushing it again!" I guess I had. I do this. I try and try to prove to the world that I am still the same person and don't worry about me, but then I look back at how much that actually pushes people away. You want so desperately somedays for someone to give you a bit of leway for being vulnerable and not being able to do things like you used to, but because you've pushed them all back and said "I'm good, I'm good" they can't win and they tend to go with your signals. I only have myself to blame when I have those down moments and feel like I need a hug and pick me up and I don't get it. My friends are amasing... I think they see through it!!!
It really did hurt!!! : I was kiting the other day in really really strong wind conditions, I was so proud of me! A tiny little kite flying above me keeping me fully floating across the waves, along comes a wave, a little pop and I'm in the air! .... This has to be followed by a landing! (well sometimes!) So I plant it back down and it goes with a bit of a bump... but it doesnt hurt! This is a REALLY good thing! I remember how often I used to come off the water not being able to see or keep the picture straight, desperate to get that kite on the ground and sit still to stop the world spinning. It happens a little bit but ITS SO MUCH BETTER!!!!! I never thought it would happen. I never thought I would feel better! so this is good news everyone. It does get to the point where it doesn't hurt all the time. The lesson... If I'd listened to my body earlier I would probably be further along now! I know I know... but see point one!!! I just can't believe how much I did when it hurt so much. Was it really worth it?
I finally understand my triggers! : This is a BRILLIANT one! Back in the acute phase in that first year when everything is all swollen and being deaf is enough to deal with let alone the constant fatigue, you don't notice WHY you feel the way you do. Everything is just a side effect of all this. Everything just feels like a huge effort to make progress and manage little tasks you could do so easily before. You get down days, blue days, frustrated days, days when the words end up as word salad in your head and mouth. Finally I understand that whatt I do directly affects this. It probably did but you can't see it back then its just one big symptom. For example, I can now see that if I get tired, or stressed or let my blood sugar drop I will get symptoms that stop me from thinking, organising being rational or being able to say the right words for the right things. Going out somewhere loud and noisy makes the tinnitus worse and I won't be able to hear very well the next day, I'll be wonky and have a splitting headache. Finally I can work out how to stop the symptoms from being too much of an intrusion into life. :)
So there you have it! Even at this "late" stage things are moving forward. I think I didn't believe they could but they are! I have just started a new job and was so worried about the deaf thing. IT ISN'T THAT BAD!!! I can manage it. I was worried I would be at a disadvantage.. and at times I am. But stand on the right side of people, make a joke about it and it's all good. I got myself a dummy hearing aid... to use as an indicator to people and patient's that I'm deaf... Silly thing just keeps falling out! It doesn't have a plug does it.. it's just plastic!!! hahah So that lives in the bottom of my bag!
The point is... It's not worth dwelling on the things that have happened and the things that you've lost. What is important is what is left behind.
It may have changed you all this, it has me, but people keep pointing out that I am lucky in a way. Ive been able to prioritise my life. I've stared it all in the face and now I can choose whats important. I may have lost hearing. I may still have bad days. I may want to rip the right side of my head out to kill this tinnitus and stop the bone pain.... BUT what they didn't do is affect me fundamentaly. The symptoms you can treat... you... you are still you under all this :)
You guys have sent some awesome emails recently and I'm currently designing the new page about others. If you want to be considered for it do please let me know! I want people to really have something to compare against.
Little round up...?
Eyes... only bad in the wind and when Im tired. It gets weak and I can't see the picture as clearly. Lid ok.
Tongue... totally numb still! Was very funny when I went to the dentist and she numbed the good side.. It clearly compensates because I couldn't feel my mouth at all!! I think I may have dribbled ALOT!
Hearing.... so used to being deaf now. It took some time but I'd say now its actually the least of the symptoms. Except at those self service checkouts.. I can't locate the beeps so i hear a beep and think it's scanned.. put it in the bag and then get into trouble for trying to steal!! Thats happened more than once!!
Tinnitus... urgh! Sooo annoying. But I'm working on a referal about this.. more about this next time! I just have to ignore it. :( It's so fatiguing trying to hear above it.
Balance... So much better. It really only affects me when I'm tired. I have to manage the tiredness. I still can't do a full tray in a cafe though!!
Tiredness....This is the killer I think. It can be totally debilitating. When you're exhausted I just end up switching off. Body says no. I can sleep for hours. I haven;t worked out how to prevent this yet but I will!!!
Right you lot... Take care... STAY IN TOUCH. You are all doing so amasingly those of you that have had recent surgery or are about to have or are waiting for a diagnosis. Everytime I go into the anasthetic room with a patient and they get put out it takes me back and makes me remeber, so I don't get far from remembering those feelings before that surgery. I get it!!!