Why me? Not an exercise in self pity, but an objective analysis of how I think GCA got me.

[Dontwannabesick]

Anyone had similar scenarios? I really do think it is stress, and not always bad stress.

Me? Lived my life 100 miles an hour and loved it. I was a computer project manager with a brilliant team developing Internet projects and an award-winning Intranet system ( Intranet was small web just developed for inside the company but we won the CBI award for best new Intranet).

Before work every morning would make a 45 minute drive, swim 1 Kilometre at a pool near work, then into work at 8:00am. Loved the swim, exercise and meditation combined. Ready to go.

Next project to renegotiate 268 supplier contracts to get a better deal for my employer ( sympathy to Theresa – Brexit?) before being seconded to the team which managed the outsourcing of my own department to an external company. Spouse very ill. Car dying.

Early retirement due to a very ill spouse, and kn*ckered car, but can't resist a challenge can I ? Started my own internet business which we ran for 7 years. Made profit from year 1 then sold the business to our biggest trade customer. During this time spouse became more ill and I had to fight tooth and nail to get help for him. Succeeded, 'cos I'm like that.

Next was the deaths of my much loved elderly neighbours, ( who we loved more than close family and still mourn) and in due course, the arrival of the new neighbours from hell. These unmentionables have cost us thousands of pounds in damage to our property due to irresponsible excavations which have dragged out the foundations to our walls and caused damage. Every avenue explored and no legal support or recompense.

Then amongst all this my Uncle and Aunt, who were childless ask me to be their power of attorney because my much loved Uncle is terminally ill with cancer. My Uncle died and my lovely stoic Aunt, after nursing him at home, tried to soldier on, but fell and broke her hip. Eventually ending up in a care home, near her friends but a 50 mile round trip away from me. But hey - she's happy!

When GCA really started to manifest I was preparing for a get-together of old friends at my house. As always 30ish people were coming to party and stay the weekend in spare beds, tents in the garden, bed in my spouse's van. Whatever. I love these weekends these are my oldest and dearest friends. Comments were like ' how do you do this?' 'Where do you get your energy?'. At that time the answer was 'wine and Naproxen' but I was struggling to chew my food due to jaw pain.

Two weeks later and my cousins are visiting from Australia. It all unravels. My GP (thank you Doc!) hauls me in and sends me to urgent care because he has diagnosed GCA. I'm stressing about missing my cousins and they're all telling me I'm seriously ill and need urgent treatment. Heck !'

Anyway, what have I learned ?

I truly think stress played a major part for me, and a lot was self-generated. Retrospectively, I look at what I am doing. Still, to this day, I project manage my life. I set myself targets and deadlines. ' I must finish the ironing by 12:00 mid-day'. Why? It's ridiculous. I can see it now, but it's how I was (am) built. Pill before jam. Do the chore, then you can relax. Why? If you don't feel like it don't do it. Nobody's going to die.

I am learning about my bossy self. I never drove my team at work, I drove me, I would defend them to the hilt because they did their best and it was good. The pressure was my responsibility, not theirs.

Sorry for the long post. The message is don't rant, don't drive yourself. CHILL. And love to all. X

[SheffieldJane]

You created the perfect storm and have the insight to see the parts you could change, but often life just happens to us, and we’re left clinging to the rocks.

We’ve had discussions before about type A personalities and how they drive themselves until eventually their health breaks down and they are forced to stop. I think there are a fair few on here. You can even find yourself being competitive with the illness eg no weight gain, strict diet, rigid tapering. Try not to. You’ve had some hard knocks and it’s time to reflect and heal. Take care! Jane x

[bunnymom in reply to SheffieldJane]

Very insightful Jane about being competitive with the illness. I think of it as control but competition is almost better. I have come to grips about eating, what I can and can't do, exercise too. I think I have surrendered to life as it is and it is quite peaceful this way. Took me 2 years and 9 months!

[SheffieldJane in reply to bunnymom]

I honestly think that “ surrender” is a key part of recovery. I don’t mean giving in to unnecessary drugs or anything like that. Just an acceptance that things ain’t what they used to be and dealing with the reality of now bunnymom.

[bunnymom in reply to SheffieldJane]

Yep...

[Dontwannabesick in reply to SheffieldJane]

Jane, you are so right. I read what you wrote, and yes, I am competing with the damn disease. Trying to control weight and have successfully not put on weight since day one. fat has migrated a bit ! I have even started to refer to it as 'my ailment' in order to downgrade it, but I'm learning now. I have a friend who has gradually lost her sight due to type 1 diabetes and she is a rock. She has been through tremendous lifestyle changes and shown great fortitude, she is talking all the time about the positives rather than lamenting her losses. Lesson to learn x.

[Blearyeyed]

So many of us have similar stories.

This illness does three things that change your life , when it goes , you may find it will have changed your life for the better.

1. It teaches you not to sweat the small stuff.

2. It teaches you to be more honest about your feelings , mentally and physically , with those close to you.

3. It teaches you that it is alright to share the burden , you don't have to do it all and it will still all work out.

If you learn these lessons early the disease ,although exhausting, is alot easier to cope with for you and your loved ones.

Being open about your health and how it makes you act or changes what you do means everyone is ready for it and more understanding.

You may lose touch with some friends or family but you also learn who your real friends are and they are often the people who were on the periphery of your social circle before.

Learning and being willing to accept your limits and get help in practical things means you don't feel as bad about the changes you have to do as you recover.

You learn to save energy for what matters , and that's getting better.

Rest when you want , not when it's usual.

Leave the phone , take days of from people.

You will need that rest time to help you keep your cool with the ups and downs of getting treatment the way you need it .

This condition like all storms will pass , but it will leave it's footprint both bad and good.

It will make you stronger , more thoughtful , to pause and think before you speak ( the question is it the Pred talking or do they really deserve my wrath will come up regularly)

ahe finally it will make you patient and calm.

Take care we will always be here to help you along the way, advise you if you need it and give you supportive shoulders and electronic hugs when you need someone to talk to.

You are still you , you are just you with an illness , it will change the things you do not the person you are , except for making you stronger than ever.

[Dontwannabesick in reply to Blearyeyed]

Thank you so much for this post and for sharing your wisdom. Just reading beautifully written post made me feel calmer and more optimistic. Today has been a better, more restful day. Thank you, I am taking this on board and will follow your advice x

[Blearyeyed in reply to Dontwannabesick]

Just glad to hear you enjoyed it and found it useful.

If it makes you calm you could always print it off to read it when you feel bad.

We are all here for you , faraway friends that have your back, willing to listen to things you need to talk about but don't feel comfortable voicing to the people near by , and willing to give you advice if we can , or make you laugh if we can't.

You are not alone , and you will get through this in the end.

Have a wonderful and relaxing weekend.

Be xx

[Dontwannabesick in reply to Blearyeyed]

Do you know be, just after I replied to you last night I did print your post out. Like you say, I will keep it near me for when I need some calming influence. X

[Blearyeyed in reply to Dontwannabesick]

I am so glad it helps.

We are all here for you whenever you need some extra help too

Take care xx

[Hidden]

Reads a bit like my life! Plus being a perfectionist by nature doesn’t help!

[Brantuk]

When I asked my rheumy about the causes/source of my GCA, he said they just don't know. He said it could be genetic, age related, something to do with diet, or stress and lifestyle, or any combination thereof. What makes the immune system turn against the body is anybodys guess at the moment and more research needs to be done. Meantime they can only manage symptoms until it goes into remision, and how and when that happens varies widely accross all patients.

My advice - don't blame yourself it's not your fault, just chill out, relax and try to achieve a bit of happiness in your life. Don't wear yourself out before you've had chance to let your body repair itself. But keep a close eye on symptoms, monitor progress, and protect yourself from known problems. Good luck.

[Dontwannabesick in reply to Brantuk]

Thank you, good advice which I am going to follow. Started today and already had a better day. x

[Hidden]

Sounds like me to some extent, always setting deadlines and goals, thought it was my sales background. Even now, must do quarter of an hour's weeding every day, must thoroughly clean one room etc, I get so frustrated as it usually can't be done and if I do 'achieve' as I call it I'm usually to knackered the following day and sometimes the day after then I get totally fed up and start nagging oh to help a bit more. Still, politics is exciting atm I want to stay alive to see the outcome.

[Dontwannabesick in reply to Hidden]

Just like me, except I've only just stopped playing the martyr and asking OH for help.! x

[SnazzyD]

Hello. It’s funny isn’t it? One thinks it is all unexpected but once written down, it is clearly a case of when not if the body will implode in some way. It never was sustainable was it? I’ve always been pill first jam later and have been a slave driver and worst critic to myself. This illness can feel like a curse but to me it has felt (eventually) like a grave warning because I kept putting the memo in the bin. I’m learning so many lessons and the hardest has been laying to rest the need to see myself as doer of everything, achiever and helper to all. The schedule for ironing made me laugh as I still project manage my life but now if I miss a target, I shrug my shoulders and ask if it really mattered. I still struggle some days with loss of my old identity and need to be superwoman. I am still superwoman but the cape is long gone and the shiny external pants for all to see and are an inner pair of sensible big knickers. I take the bus instead of superwoman flying and still get there just more slowly but having taken more notice of the scenery.

[peace_lover in reply to SnazzyD]

I just love your last sentence! Thoroughly agree. 🙂

[bunnymom in reply to SnazzyD]

I still have my lists of to do (as I can't remember) but not unusual to move jobs over to the next day or two depending how I feel. I like to look over what I've accomplished no matter how small.

[SnazzyD in reply to bunnymom]

Yes, I’m a great fan of the tick list, even if I have to retrofit a task done just to see it there ticked.

[bunnymom in reply to SnazzyD]

Haha yes indeed!

[Dontwannabesick in reply to SnazzyD]

I'm learning now, and the good advice and wisdom in the replies to my post are showing me how daft I've been. Still can't help counting how many shirts to iron, though, but yesterday I sat down and put my feet up whilst the iron cooled from hot to medium.

Probably like me you're a very proud person and admitting to weakness of any kind really galls you. Hey ho, I'll dig out the big knickers. (If a pile on any more abdominal fat I'm sure gonna need them !) x

[bunnymom in reply to Dontwannabesick]

I read that the low abdominal fat was called a fat skirt. Yikes! Thank goodness for tunics and stretch leggings.

[Marijo1951]

It's very interesting to me to read your story and the other responses, but my own character and life story are completely different. I've always been one for procrastinating - I'm basically lazy I suppose. All my life, one way or another, people have said I'm not fulfilling my potential. I can remember times in the past when visitors offered to do the washing up or the ironing, which I thought was rather rude, but realised that other people were unlike me and were genuinely bothered by unfinished tasks.

When I first went down with GCA/PMR I felt annoyed with myself because I realised that until then I'd been blessed with very good health and hadn't made the most of it. I still wish I had more of a 'seize the day' mentality, but on the whole I don't regret having been a bit of a lazybones. I managed to read numerous books among other advantages. Being like this has probably enabled me to adapt more easily to the necessary restrictions that the conditions impose on one.

I'm fairly convinced (ridiculous though it sounds) that my illness was initially brought on by the Brexit vote, which shocked and depressed me very badly. That, plus some problems with one of my children and squirrels in my loft keeping me awake and chewing through the wiring, simply got me down and made me susceptible.

[PMRpro Ambassador in reply to Marijo1951]

My twin!!!! If you can put it off until next month why do it tomorrow?

I can't blame Brexit - though I suspect it has a bit to do with this current flare and certainly how I feel today. For the first time I heard our medical care mentioned and it wasn't particularly encouraging in the face of no deal - not with the current Italian government.

[Marijo1951 in reply to PMRpro]

PMRpro, I can't believe you're like me, not with the interest and diligence you show with regard to this forum. We're all very grateful to you for it.

[PMRpro Ambassador in reply to Marijo1951]

Oh I enjoy this - it's the housework and such I procrastinate over. And phone calls...

[bunnymom in reply to PMRpro]

I too was shocked but I do remember you don't like house work. Lucky for us you enjoy the computer ❤️

[SnazzyD in reply to PMRpro]

I have to say there has been an air of depression in the house since the referendum.

[SheffieldJane in reply to Marijo1951]

I am more in your camp I think Marijo but then I do have a “ a not good enough” running commentary, so I perhaps try harder than I think, always imagining I am falling short.

[Dontwannabesick in reply to SheffieldJane]

So like Marijo, maybe the sense of falling short was in itself stressful?

[Marijo1951 in reply to Dontwannabesick]

I never said that! I never wanted to be like the people who criticised me, whether directly or by offering to do chores. I wouldn't want to get twitchy because a few cups haven't been washed. I don't think I've ever neglected anything that was genuinely important.

[piglette in reply to Marijo1951]

It was PMR that caused Brexit just when I thought it was pred!

[Dontwannabesick in reply to Marijo1951]

But did not the criticism and rudeness cause you stress?

[Marijo1951 in reply to Dontwannabesick]

Not really. See my reply above. However I do admit that with a bit more dynamism, I might have achieved more.

[Sandradsn]

Oh my goodness what a load of stress! I am in no doubt that the awful stress I was under brought on my PMR, my body was worn down and worn out😣

[Hellyowl]

Hi,

Similar stuff, started a charity, ran it on a shoestring for 8 years working 7 days a week, completed a masters degree and started a PHD, Mum died dramatically sitting having a cup of tea with me (Oh heart attack from stressy lifestyle) and Wham, GCA.

Serious need for research into the 5 years before GCA PMR starts.

[Dontwannabesick in reply to Hellyowl]

I agree

[arthur463]

Wow! - Such an outpouring of wisdom and experience here.

I too was a self-driver until I developed GCA, and lost the sight of one eye. Then, unlike some, I simply surrendered completely. I just rejoice in each new day - because I am still here, and a part of it - in a one-eyed kind of way. That'll have to do for me.

[Hellyowl]

I can't imagine where I would be if I had lost the sight in one eye, you do exactly right, make the most of what you have, I still drive myself to hard, have promised OH I will slow down soon

[Slowdown]

PMR in many instances changes us from the family 'dynamic indispensable' to an 'on the periphery onlooker', an uncomfortable position on life's chessboard rather like a Queen being demoted to a pawn, they're useful but rather an undistinguished crowd! As if it wasn't bad enough being considered 'old' I am also short-circuited, alternating between high and low energy without a trip switch except for fizzling out mid-evening, feeling hurt if ignored for too long although I'm very content with my own company, but a bit more forthright, less energetic than family is used to. They were still seeing me as good-old 'Mum' despite fulsome (and tedious for everyone) explanations they didn't adjust to the not-so-good 'Old' Mum. So something had to change and it was me.

I left 'the children'. In their 30s, 40s and 50s they are deep into their lives, two fairly close by, one half a world away, all affectionate, one particularly is on my wavelength and her visits are joyous. But I left the details of their lives for them to tell me, not to always expect to be included or live vicariously through their energy and busyness - they know I will always help and that I dearly love them each for who they are. And the space inside me became calmer. Every day I walked-and-thought, I wrote my 'morning pages', just a 20 minute exercise with notepad and pen next to my bed in that half-awake state where dream and reality are coalescing - where the imagination lives.

I live alone so time is mine to shape or fritter and imagination soon starts begging for expression. Many in this community have delved into their hitherto unexplored creative talents and find wonderful expression in painting/writing/crafts as a result of our enforced 'slowing down' and a need to find SOMETHING to help restore a sense of purpose and individual fulfilment in what suddenly became a shockingly restricted existence. Photography and grappling with the 'digital darkroom' of Photoshop after having my own darkroom (consisting of black plastic bags taped over windows, and a bath always festooned with dripping prints) is my imaginative outlet, and a very big learning curve. it's totally absorbing. I'm having fun, producing 'something' as a result - always burns well on the fire when it goes wrong... but making space for free-range inner roaming and the creations that arise from that has given me back a core of belief in myself as a worthwhile human being.

Time to stop.

[PMRpro Ambassador in reply to Slowdown]

I wish you hadn't. Stopped I mean...

[Slowdown in reply to PMRpro]

Just come back from a twilight walk to find your nice comment, thank you .. I've been thinking about this internal 'clearing space' for a while (a shame it never extends to my actual living areas).

Old patterns of family behaviour are very hard to alter so as we age we're nearly always going to be disappointed by others' apparent lack of interest because we don't really 'see' each other as we are now. They are too busy to take stock and unconsciously develop a 'blind spot' to shield them from the obvious mortality of their parents. We are the ones who have experienced what our offspring are going through now, so we should have the understanding and the grace to gently place ourselves gratefully back in our own life. Relinquish the responsibilities,keep the love. And have a 2nd. 3rd or 4th childhood! ... stopping now

[PMRpro Ambassador in reply to Slowdown]

It is so true and I think we stand well back. However - they get very irrate and assume we hide things from them...

[Slowdown in reply to PMRpro]

Parents are noted for never doing anything right, aren't they? If we ask, we're interfering, if we don't, we're uncaring ... Depends what they think you're hiding!

[PMRpro Ambassador in reply to Slowdown]

Mainly health-related...

[Slowdown in reply to PMRpro]

so not the number of a Swiss bank account where their inheritance is loitering, then...

speaking of health matters, it's wine o'clock here. Prost!

[PMRpro Ambassador in reply to Slowdown]

Nah - we're into ski holidays (the spending inheritance variety) but do have a property portfolio that should be a bit more resistant.

Yes - time to cook - and get a glass! Zum Wohl!

[Rimmy in reply to Slowdown]

A fantastic (insightful) post Slowdown !

[Slowdown in reply to Rimmy]

Thanks, Rimmy - decided I wasn't hankering for the old me to return so began wondering how to construct an evolved version. As with life in general, it all begins with clearing stuff out...