Preventative Maintenance

[Fishmanpa]

Hard to believe but last Thursday the 25th of April was one year since I ended treatment. I went from ringing the bell to surgery to have a PEG tube placed and was home three days later. Thus began the journey of healing that I'm still on today. It didn't really hit me until mid afternoon when someone asked how I was doing.... then it dawned on me... A year... holy *&^#% where did the time go?

All in all, the plethora of side effects aside, I'm doing Ok. Playing music again and have been working full time since last August. Getting married to my Chiquita soon. Life goes on as much as it can under the "new normal".

May 5th is me next appointment with my ENT. May 20th is my appointment with the rest of the team. The "scanxiety" hasn't reared it's ugly head yet and I intend to keep it that way. My GP prescribed a mild "chill pill" and it helped the last time I was dealing with my Dragon. So I started taking it yesterday to ward off the visitation. Fortunately, nothing indicates there's anything to be concerned with (unlike the last scare which was a BIG one). I'll be addressing the continued side effects and pain and I'm confident a few adjustments with a med or two will help hold the symptoms at bay. I have my trusty CBT techniques in my back pocket as well to help suppress some of the illogical and "what if" thoughts that naturally occur when one is a survivor.

This brought to mind what some of you do as preventative maintenance. Are there things you do or practice to avert a meltdown? What techniques do you employ to stop the spiral once the mind starts spinning? Some talk about acceptance or CBT techniques. Others have meds or a "chill pill" that eases the stress. I'm bound and determined not to let my "scanxiety" get the better of me again. I'm not the most pleasant person when I'm stressed and I hated the way I felt when I was in the midst of the attack. The last time was very difficult and totally exhausting both mentally and physically. When I read of some here who suffer with it 24/7, I can only imagine what it's like to live that way every day.

Perhaps a strategy can be employed where you keep an arsenal of weapons to use when a threat becomes imminent. Just some food for thought....

Here's to a NED report and getting through the next year of "scopes, pokes and prods" every three months! ;)

Positive thoughts

[ankietyjoe]

Acceptance and meditation for me.

Those two things have literally stopped me losing my mind in the last 3 months (probably the most intensely stressful of my life due to illness, financial ruin, post viral/illness fatigue syndrome of some sort and the inevitable black, black cloud).

[Catherine S]

Fishman, compared to your very real health scares, it puts my health anxiety to shame...you're an inspiration to alot of people here, you keep our feet on the ground.

My biggest fear is travelling...whether its motorways, trains and boats or planes, they all have the ability to freak me out, but after all the years of living with it I do have my 'props' to help me cope. If I know i'm going by train anywhere I look for cheap deals in 1st class because its never crowded in there....so room to relax. I always sit near a door wherever I am for easy escape and I carry one of those small menthol sticks that help you breathe so that if I feel a panic coming on, my breathing is the first to be affected, out comes the stick lol! But it works and once my breathing is back under control I calm down. I can never sit in the back of a car with only 2 doors either...no way! :scared15:

If I have to book a flight I pay the extra to choose my seat when booking online, usually near the front so I don't have to see the whole plane full of people in front of me...much rather they are behind me, and I read a magazine or book as its taking off to distract me. landing doesn't seem to bother me too much, but i'm always relieved to hear the rumble of the wheels as they drop down!

I have loads of small but effective coping tools that I use and they seem to work most of the time. Panic for me is like flicking a switch then my body just takes over and I have to ride it out as best I can.

Well you did ask :D

ISB x

[aprilmoon]

Still assembling my toolkit,interested to hear what other people do.

[Sunflower2]

Yoga is the best thing I ever started at the beginning of the year. Love how calm I feel afterwards plus I'm much stronger and more active!

[MRS STRESS ED]

I have the best two tools in my tool box, fight and aceptance when used correctly they do the job and sending you best wishes to you and yours and best of health to you fishmanpa xx

[Rennie1989]

You've come so far, Fishmanpa!!

Since my crisis in 2011 I keep my moods under a microscope, sometimes it's not good because I focus on that too much, but considering how awful the crisis was I vow to never let it happen again. But because I never noticed the change I rely on my husband to feedback to me when I'm beginning to go a bit 'loopy', per say. I now understand some of the fundamentals, like what triggers my mood to spin out, and either remove the trigger or approaching with caution. With a career in the future, either in counselling or writing, that target has become my tool. When I feel rubbish I try to write, do housework or anything that taxes the mind, like puzzles. I am also making a change with my lifestyle, by eating, relaxing and generally living better. I hope that with a healthier body I'll have a healthier mind which will avert a future crisis #2.

If anything, my husband is an absolute trooper when it comes to my health, he puts up with so much!

[SADnomore]

Puzzles! I forgot how much I love crossword puzzles ... Thanks Rennie!! :bighug1:
Marie

[RoseEve]

When I get the irrational thought i instead of falling down the spiral of anxiety I challenge the irrational thought with rational ones. I think that repeating this method becomes a new habit.

[Lilharry]

Rescue remedy! I swear it works. And meditation is key for me. Having a plan also really helps too and putting trust in other people - I think you have to that as illness is a huge burden to take on by yourself.

[SarahH]

Good luck Fishman.... you have come so far and we are all rooting for you:)


I do a little Mindfulness and give myself a "good talking to".....along the lines of... "stop this now!! Compared to others you have a good life Sarah". I am guilty of feeling sorry for myself at times....which is completely selfish.

Sarah

[Annip]

Hi
I use rescue remedy (Bach). I use meditation and acceptance of what is happening to my body physically from the anxiety and mentally when I feel low. I try balancing out my thoughts ie turning a negative thought into a postive one and keep repeating the positive one. I try not to listen to the negative thought..it is only a thought and it can't hurt me. Each day I think of 10 good things that have happened even if its just getting dressed, or washing my hair. I try mindfulness ...really focusing on nature, or things I like to do.
Sarah, don't ever feel guilty of feeling sorry for yourself..give yourself a break over that. This illness is tough and we are human to feel things like that. It is not selfish.
I have been told that I have PTSD. I struggle quite alot with panic and anxiety but I try to remember that it is not all day, some of the time I can feel ok and other times I can feel great. Take care everyone and remember to live in the present..you can't change the past and you can't predict the future.
Annip :)

[Tanner40]

Happy One Year Survivor Anniversary, Fishmanpa. I'm so happy for you. Good luck with the upcoming three month check. I am certain that all will be well

Writing and CBT have been life savers for me in regards to preventative maintenance to keep my panic attacks at bay. Recently, I have implemented a healthy eating plan, which also seems to be giving me more energy.

Meditation also helps when I take the time to do it. That is definitely an area of improvement for me. And acceptance of my symptoms is a must. Without acceptance, I can easily spiral off into the world of "what if's".

[Fishmanpa]

Thanks for sharing :) Some of the things you do, I do as well.

Acceptance has been my saving grace. Not only of my physical symptoms, which are many, but of the psychological ones as well.

I constantly fight with myself (self talk) about getting frustrated and depressed due to the physical symptoms and limitations. For instance, yesterday I felt pretty good. I didn't even take any pain killers. We went to the flea market and walked around. Then I cut the lawn and did some "honey do" stuff around the house. Later in the day I went fishing for an hour or so. It was when I was out that I hit the wall and the pain started. The neuropathy in my feet started acting up and the general neck ache and body fatigue kicked in. By the time I got home I was miserable. It was then I took the pain killers and used distraction to take my mind off of the pain. I'll watch some silly videos or comedy to get me laughing and that helps.

Since I'm so aware of my body, I recognize when something is amiss outside of the "new normal". I don't anticipate anything out of the ordinary that would be considered a red flag so I'm not as nervous this time around. Last time the chest pain was a bugger for sure. Add to that the swollen gland scare and it was a rough time and I immediately recognized the symptoms of anxiety and stress.

Like I said, this time around, I started taking the anxiety med my GP gave me. It's a minimal dose and it definitely helped last time. The advice was to start taking it a week or so before the appointment to help keep my "scanxiety" in check. So far so good. It's really no different then practicing CBT, mindfullness, meditation etc. every day to keep the Dragon at bay.

Positive thoughts

[aprilmoon]

Well done Fishmanpa
I had a major operation last year,with 3 stays in hospital,and an uncertain diagnosis that I had to carry around over Christmas.Thankfully it was ok,but I am still in pain most days with a knock on effect problem that I may need some more surgery for.
Your warmth and enjoyment of life comes through in your posts,dispite the pain you live with.
Best wishes to you.

[Fishmanpa]

So, despite the meds and using tools in my toolbox, the "scanxiety" is acting up... Uggghhh...

I awoke last night after about two hours soaked in sweat with a nasty headache. The nueropathy was really kicking and I had stabbing pains in my feet so bad they were making me jump. Definitely stress about my appointment Monday. It's interesting in that I "know" what it is and I'm totally rational about it. I "know" its my body reacting to the stress of the "scope, poke and prod" that's coming. Although I'm not dwelling on it (at least consciously) , there's that "what if?" my ENT sees something. I ended up coming downstairs, took a gabopentin and pain meds for the nerve pain and watched mindless BS on Youtube until I started getting sleepy again.

Thing is, I feel Ok. Yeah, I have side effects galore but there's nothing that indicates anything is amiss unlike the last time with the viral infection and swollen nodes. On the positive side, no chest pain or any of the nasty symptoms like I had in February.

Anywho... as they say... "It is what it is"... life goes on right? ;)

Positive thoughts

[Fishmanpa]

Officially NED (no evidence of disease) one year post treatment!

Positive thoughts

[Tanner40]

Wow, yes! What great news, Fishmanpa. Love you and this great news. You and your lady should certainly go and celebrate. Can't begin to tell you how happy I am for you.

And FISHING! I love to fish.

[Fishmanpa]

Wow, yes! What great news, Fishmanpa. Love you and this great news. You and your lady should certainly go and celebrate. Can't begin to tell you how happy I am for you.

And FISHING! I love to fish.

Thanks Tanner :) We had a celebratory meal at our favorite Baltimore Seafood Restaurant "Mo's" I had fried softshell crabs for the first time in 14 years!

I got my fishing license a few weeks ago and have hit the trout streams for the first time in a few years. Nothing like fresh trout literally 15 minutes out of the water! We have a few absolutely beautiful streams that run through State Forest here.

Positive thoughts

[swgrl09]

Congratulations :)

[bernie1977]

Brilliant news Fishmanpa :D

[aprilmoon]

Congratulations!!