Tempus Fugit: It’s been 2 years, 1 month and 5 days... - PMRGCAuk

PMRGCAuk

20,925 members39,411 posts

Tempus Fugit

16 Replies

It’s been 2 years, 1 month and 5 days since I first experienced the godawful headache, that I was sure would kill me.

Surprisingly, it didn’t!

However, there were certainly times when I wish it had… but then again, they say what doesn’t kill us, makes us stronger.

And I’ve definitely found that to be true.

I’ve survived several broken hearts, unspeakable loss, debilitating grief, ugly divorces, numerous serious illness… and more! I’ve always come out on the other side, stronger, smarter and more resilient.

So, I guess it’s just as well that damn headache didn’t kill me!

There were also numerous times, in the last two years, when I didn’t think I’d make it this far…. but here I am two years down the line, on only 12mg of Pred (down from 80mg) and living a “semi-normal” life! Who would have thought?

In the beginning, it felt like a “curse.” I was sure I was doomed. “Woe is me,” struck down, in the prime of my golden years, with not ONE, but TWO horrible, life changing auto immune diseases (not to mention the horrific side effects of the only treatment there is available, for each of them!). It really did seem like a fate “worse” than death! …but as time went on, and things normalised, I sometimes wondered, if just maybe, it might actually be a blessing in disguise?

Oh please don’t misunderstand me, it sucks! It sucks soooo bad, I wouldn’t wish it on my worst enemy; however, I have learned so much, and I have grown so much, I cant help but wonder…

What have I learned? Well, I learned how to …

* slow down,

* put my needs first,

* say “No,”

* rest,

* listen to my body,

* deal with stress more effectively,

* eat healthier,

* do nothing and not feel guilt,

* not take things for granted,

* respect other people’s opinion,

* let more things slide

* be more patient

How have I grown? I am more …

* grateful for all that I have and for the times when I feel well,

* open and loving towards the people who are closest to me,

* forgiving,

* inclined to listen

* comfortable with who I am,

* creative and artistic,

* expressive (especially in the written medium),

* honest, with myself and with others

* introspective and self analysing

Sure… it’s possible I would have gotten “here” without having two sucky autoimmune diseases, but I’ll never really know, will I? So, I chose to take comfort in thinking that these illnesses (and their treatment) has helped to “soften” me a little, smoothed off some of my rough edges… That somehow, being ill, has helped to make me a better, more well rounded, fair, centred and balanced person.

Ummm, don’t ask my husband if any of this an accurate self-assessment, just take my word for it, okay?

For anyone just starting out on a journey of a prolonged or chronic illness, if I have any advise… it would be to be kind to yourself.

Try not to set any expectations of yourself (or anyone else, for that matter), or your illness and you’ll never be disappointed!

Take each day as it comes and try to go with whatever the illness presents to you on that day.

On the days you feel well, be consciously thankful. Acknowledge and thank someone/something… be it God, the Universe, your Rheumy, the Pred… whatever! Just be consciously thankful to someone or something, bigger than yourself.

And let’s face it, there are many, many things out there bigger than us!

“Oh and HELL yeah,” all this? It’s way easier said, than done! And YES, you’ll fail a million times; but start each day with those intentions and you’ll be okay, in the long run.

After all time does indeed fly, and before you know it, you will normalise into your illness and maybe you too will grow and learn a few things about yourself.

*************************************************************************************************

“You may not control all the events that happen to you, but you can decide not to be reduced by them.”~Maya Angelou,

16 Replies
PMRpro profile image
PMRproAmbassador

Pleased to hear it - and can I say: we did say so! ;)

in reply to PMRpro

YES! You can definitely say that!!!!

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

Uhmmmm...

Merry Christmas, Mel.

in reply to GOOD_GRIEF

Thank you! Merry Christmas back at ya GG!!! xxx

Rimmy profile image
Rimmy

Eloquently put (as usual) - thanks XX

in reply to Rimmy

Thank you my friend! xxx

I read this on FB this morning before l saw it here, interesting you feel the Pred has softened you, made you more creative & certainly enhanced your way with words.

When l was on high dose Pred, plus the time they added Dexamethasone in for good measure (Chemo) l was so OTT l was so excitable but it was simply an exaggerated version of Me! And, recently that is what l’ve become the opposite of.......

A really good read Melissa 📖

in reply to

Thank you Angela... I don't think it was the "Pred," necessarily... but getting the two illnesses, having my world turned upside-down, and being forced to face my own mortality and the fact that I am ageing... that has all softened me. ❤️

...but yes, on 80 mg I was banshee!

in reply to

Thank you Mrs Nails.

Mary63 profile image
Mary63

Well....a calm, considered, ‘softened’ Melissa. Wow! Make sure you don’t completely lose quirky, feisty Melissa on the way. Glad you are feeling so much better.

in reply to Mary63

NEVER happen! You know me, and THIS is the softened version, Hahahahaha

SheffieldJane profile image
SheffieldJane

You are in a happy, philosophical place - I love it there. I find that it takes work, totally worth it though. 💃🏽

Mstiles profile image
Mstiles

So beautifully written! I can relate so much to your post.

Thank you!

in reply to Mstiles

Thank you so much!

jannie21 profile image
jannie21

Brilliant read Melissa you sound content. Also good for people who are in the middle of all this illness. Best wishes Janet x

in reply to jannie21

Many thanks!!!!!

Not what you're looking for?

You may also like...

PMR SURVIVORS COMMENTS

Dear PMR sufferers I am a 48 year old male who recently recovered from PMR ( unusually young and...

Does lenght of time before diagnosis result in longer time on steroids?

Hiya I was diagnosed in June 15 with PMR/CGCA after 5 years of not being diagnosed. 40mgs preds was...

These are a few of my favorite things..(ideas really) after 18 months of PMR

I have learned so much from all of you so willing to share that I thought i might be able to help...

Acceptance has been the key.

When I look back over the last 2 and a half years with PMR I think the key for me to having a...

GCA called by different name?

Yes,I'm back & feeling better. Still on 80 mg pred. Have another visual field test later this week....