Hi all. I have been reading here on & off for a bit. Commented some nights too. I just need somewhere to say this, so please bear with me...thank you!
I am 55yrs old today. It is my birthday & I can't stop crying.
Just last week I was released from the hospital from my 2nd set of mini-strikes & 2nd heart surgery in 7 yrs. I have complex health issues that range from asthma, daily bilateral sciatica, my fibromyalgia, and on up to vascular EDS (connective tissue disorder that causes major organ ruptures.)
Been depressed since this last hospitalization. I really didn't expect to deal with strokes & heart surgery again. I thought that was all over in 2007.
I am okay for now. BUT (it always has a "but" doesn't it) during this hospital stay I learned that the median life expectancy for vascular EDS is 48 yrs. So I am not sure how to handle that information. Depending on your perspective, either I should be grateful to still be kicking along, or, I should be saddened to know I am past due to die.
Sooo...late last night I did something very dumb! I thought it would be funny. I took the Dr. Oz "What is your real age" test. IF YOU HAVE HEALTH ISSUES I STRONGLY ADVISE AGAINST IT!
Damn thing rated my "real age" at 67. Yep! Not funny.
Today I hurt so much with my fibromyalgia that I had to fake it through my birthday. You know what I mean. We have all been there one time or another. I kept thinking "If I don't have long to live why do I have to hurt so much". Didn't seem fair, ya know?
Then it came to me, like a whisper from God. If my fibromyalgia had not slowed me down so much, if it had not taken me completely out of my career, & if it had not forced my type A personality to conform to a slow lifestyle... I may not have made it to my 55th birthday!
Seriously! I would not have been forced to learn to understand my body as completely as I have had to to manage my pain. I doubt I even would have noticed the mini-strokes. On my fast paced job I could have ruptured my heart before I even recognized a problem existed.
So...I started a new list tonight of what I gained from my fibromyalgia:
1) I know my body enough to know when something is off.
2) I dreamed of retiring. Now I am medically retired.
3) I wanted more time with family. I have that...including being there to watch my twin grandsons after school for 3 yrs.
4) I wanted more time with God. I have that.
It isn't a long list. I don't even know if it will help me, or anyone else, overcome the depressive states I get in. BUT, with this perspective I am now crying because I am grateful to be alive. Some things really are worth managing the pain for.
Thank you for the moment, or two, of your time. I pray for each of you to have more better days than not, more love than you need, and the very best in care. God Bless!
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mikipaulo
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For me it isn't a strange perspective just the healthiest perspective to have whether or not you believe in a deity controlling things, looking at the positive things first is the way to go .well it is for me now . Has taken years to get here though lol. I even have a list of things I don't think will have happen ed had I not been housebound so long.
If you wrote all your negative things down and started from that every day would always start from a depressing point....finding out about usual life expectancies must have been a shock though
Yes, a shock! Knocked me for a loop. I must say Thank You for responding Fogginnut. You are correct that the positive perspective is very important! Sometimes, it is very hard to hold onto the positive in the darkness of depression. I shall have to use one of my "coping skills" now...I will print it & place it on my fridge to remind me of the positive.
I recently finished the 100 days of happy challenge where you had to find one happy thing per day. During that time I lost 2 people very dear to me I had 2 falls and various other things. ..but even on those days I found something that had made me happy.
It took me sooo long to be able to do it though ...even now sometimes on bad pain days I do tend to get a little grrr at 'whiners' ......before I slap myself lol. ..and have down times like everyone else. ..but I try to focus myself as much as I can on the positive as we only hurt ourselves dwelling on negatives I guess xx
The 100 days of happiness challenge sounds interesting, might have to try that. Thank you both, you've have given me a reason to stop wallowing in self pity.
It's quite a fun thing to do if you have 'trained' yourself to look at things first from a positive. I encouraged a lot of people to also take part who of course have stuff bad going on in their lives, everyone does, but I thought it would be easier for them ..However only 2 of us actually finished. ..weirdly me and another lady who has been wheelchair bound most of her life and mostly housebound too.
Sometimes I think maybe it is easier to get discouraged if you 'have' things and then something happens to knock you and you focus on it?
As I said 2 ppl i love very much died during that time but I was quickly able to shift focus onto ...wow what a life they had...What fun we had...I'm so glad they were in my life....if you see what I mean? I hope it makes sense lol xxxx
Fogginut...you sound so much like me in my up timeframes! 100 days? Sounds awesome but right now it feels like trying to swallow a cow. I shall have to chew that down one steak at a time! 1 will start with doing it daily. Shall I start a list here? Perhaps others could join in?
..before I had a handle on the whole positive thinking thing I would most probably have got either angry or cried all day seeing posts like that. Also you are open to people saying , well YOU obviously don't suffer as much as I do if you can do 100 days finding a good thing every day. Been there done that...so changed my blog to private. If you see what I mean?
I love the idea of a daily list of happines that everyone can contribute too, I really think it will help people to look for the positives in their life. Being grateful helps me cope with my life, there is always something to be grateful for even on our worst days, for me immense pain proves I am still alive, better than dead and feeling nothing! I agree with what you said about fibro forcing you to slow down, I believe I am much calmer and accepting than I was prior to fibro. I am very pleased that you have passed your 55th birthday and hope you have many more, all the best,
My pain management counselor prescribed for me: 1 pity party 1 x week, maximum 1 hr per session. Immediately followed by 2 hrs of pampering myself.
She said "it's a damn lot to deal with and we can't expect you to smile through it all." I have had some pretty good cries at my pity parties! The time limit is a good thing. The pampering myself is nice. My fav is cocoa & a cookie while soaking in hot bath.
I had forgotten that script until now. Makes me miss her BUT I will have to stock up on cocoa again.
You know your a bit of a miracle so good for you it sounds like you have suffered but I think nature with our survivals are a powerful god given thing so blessing to you and your family and have a nice day. xx
I started out doing a weekly post on my blog looking back on the positives that week? Maybe it is a bit much jumping into 1 per day for 100 days right off, even if you are a positive thinker. Don't want to burn you out....or make you eat a cow (?) If that's what you said hehe xxx
Thank you Ken. I must say that this website has helped me a lot...whether I am responding or just reading! You have so many supportive people helping those who need that good information & a caring word from someone who can truly relate to their situation. It has helped me a great deal just to express my feeling last night.
so sorry you have had & are having such a rough time. I think your post is very inspirational and well done for turning things around to look at the positives in your life.
Try to forget the ages/lifespans you have seen. All any of us can do is live each day the best we can and make the most of what we have and the loved ones we share it with.
Thank you agft1 & gentle hugs to you as well. I have been reading more here to night. I am a little surprised by what I wrote. I mean that I wrote it in public. I don't usually "journal" in a blog.
I have had to work super hard to overcome a sense of guilt about coming off work. Doing so DRAMATICALLY changed our life. Let's just say SS Disability is something close to nothing.
Out of guilt I was keeping my negative feelings inside (x7 yrs.) I thought I was helping my husband by nit complaining. WRONG! That developed into a dangerous depression.
I finally learned to talk. 1st in a private journal. Then in a journal my hubby could read, and then talking to him. I am not good at talking about pain, fears, etc. yet.. Like, it was the day AFTER I wrote this that I told him what is going on. He has been wonderful & supportive!! He said he worries less when I talk about what I experience.
Anyway, talking here must be my next step. I really thought finding a positive result of fibro was a weird perspective. Everyone's response is only now allowing me to accept it as a positive perspective. Thanks;
Well done for finding the strength to share your feelings & so glad you have a supporting husband. This site is very good for expressing those feelings too hard to discuss with our loved ones.
I know what u mean about the guilt - I have had to decide to stop working & will be made redundant on medical grounds in May next year. I already work from home & hours reduced to 3hr a day & workload to a minimum, but still I experience so much pain & exhaustion that I can't go on & my husband has told me to stop work. But knowing that I am putting our little family (we have 7yr old daughter) in a situation where we may well loose our house & not sure how we'll manage and if I'll get any benefits is almost unbearable! I have worked all my life and been the main breadwinner & owned our own house since I was 19. I know by stopping work that I'll take pressure off my husband, be able to help with the housework & looking after our daughter & hopefully get a more even keel with the pain & exhaustion - but at this stage don't know how we'll keep a roof over our heads. Unfortunately I know most of the benefits I can't apply for until I've stopped working & am currently trying to get someone in medical profession to support my PIP claim.
So taking a huge leap of faith & praying that something will work out for us xxx
Oh my...I fully understand that feeling! My work was such a huge part of my self esteem. I didn't even know how deeply entrenched it was. A year after leaving work my husband & I were feeling out forms. I listed my work status as "disabled". My husband whites it out, hands it back to me & suggests that I write "homemaker." He said it was more accurate & I should enjoy the status I had desired for so many years. Of course, I cried.
What is hard, even now, is to hold onto that point in the tight money times. A big turn around for me was when I starting taking my clearer mind days (I have a lot of fibro fog) and focused on becoming an expert on downsizing our cost of living without sacrificing taste, style, or comfort. We didn't wait until we had no options but instead downsized our home right away. It turned out to be a blessing...less work for me to physically maintain. Plus, I have redecorated it twice, a little at a time, which is more affordable & a great source of fun for me
Glad things seem to have worked out well for you x
The main problem we have is that if we start to rent (&sell up now), most places I can find based on budget of only husbands wage, won't allow pets & I can't stand the thought of having to rehome our 3 Maine coon cats and our dog. So hoping something will turn up or work out :0(
It does go against the grain though, I'm not used to "wait & see", I'm usually more "make it happen", but think this time I'll have to be patient x
Yes...I see. Pets are family too. My mother had this little habit of finding rental house fixer-uppers. She could always get the pets in by dealing with the owner....something like owner buy the paint & we all painted the inside of the house. Owner buy the supplies & mom would fix up the yard. Owner lets her have pets & she will clean carpets when leaving. Oh, and being a fixer-upper she always had lower rent....minimum 1 yr lease
I have just read all the comments & love the idea of 100 days of positive thoughts, as well as the list of all the good things fibro has led me too. I have a lovely little notebook I got for my birthday that I will use, then on my lowest days I can look back at all the things I am grateful for.
In the past, as a family, we have also done a happy memories box or diary, where we write down all the happy times we've had as they happen, so that at the end of the year we can look back and realise that despite all the bad things, we still have a lot to be grateful for x
I,m also in tears. What a lovely post, I,m so glad I took the time to read it. I've had a similar eye opener & I tell you what, It does make all the pain bearable. I'm taking it a day at a time & thanking & praising GOD for it. Gentle hugs to you & stay blessed.
Dear maawasam...I am pleased that your eyes are open. I hope it wasn't a painful experience. Focusing on God, family, & friends can be difficult sometimes, through the pain. But...they have all helped. It's once I realize my eyes (thoughts) are dark.that I can finally wake up again.
Cheers for our support teams! I pray that everyone finds a good support person or team to help!
Oh Sweetheart, Bless Your Heart!!!! You are a very strong person. The Good Lord has you here for a reason and your attitude is understandable and commendable. I pray for all my HealthUnlocked Buddies as know one knows the struggles of others the way we do. I don't like feeling weak, and being in pain but I know that everything I have been through has brought me closer to God and I welcome it, because of it. This life is just a short journey, until the best part of our life begin's our eternal one with only the best of company. I pray that you will be okay. Please try just to enjoy everyday with your family, worrying only adds stress and stress causes all sorts of more health troubles. So all any of us can do is live each day a day at a time. You are stronger than you know honey!!! HAPPY BIRTHDAY & MAY GOD BLESS YOU & KEEP YOU SAFELY WITH US FOR MANY MORE YEARS!!!!! xxxxx Mitzi
Hello mikipaulo, I understand your low mood and your tears. After the traumatic events of the recent hospital stay, then tears are quite understood. May be you need to find balance, how about getting some orange essential oil and put in a burner with some warm water and inhale the vapour, also some geranium in the water in a few days to help with your balance, cry when ever you need too, it helps your body to heal,
When the tears fall like rain,They help to wash away the pain.
Now have had the time to take stock of all you have done in your life, you have discovered that becoming ill has given you a new perspective on your life, and the gladness and joy of being with your grand children over time, has brought so much pleasure, I am so glad you have found this.
Take your time and get as better as you can, and live your life peacefully and fight your conditions one day at a time, God is with you, talk to him when you can, ttfn
Thank you for the reminder of balance! Out of balance is such an accurate description of how I feel. Now that my emotions have an accurate description I can begin the work to find balance.
All my aromatherapy items are packed. We moved to TX 10 wks ago & it's been insane with medical problems. We have barely unpacked enough to eat, bathe, watch tv, and sleep...lol. But...for now I refuse to worry about it!!
Will have hubby pick up some scented bath salts for me. That is inexpensive. I have never used geranium scent before. Will check that out soon.
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whether or not you believe in a deity controlling things, looking at the positive things first is the way to go .well it is for me now . Has taken years to get here though lol. I even have a list of things I don't think will have happen ed had I not been housebound so long.
Grrr! Maybe hamsteritis?!!
Fibromyalgia diagnosis
Strange sayings
To the Wives, Husband's, Girlfriends, Boyfriends and Partners of anyone who has Fibromyalgia ....
hi im new to the group, im so happy i found this group cos i dont have anyone to talk to about how this is all affecting me 
