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Bereavement, Stress, Flare Up - Catch 22?


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#1 tisonlyme

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Posted 10 July 2012 - 01:55 AM

I could really do with some advice from people who have probably been where I am right now or a similar situation.. it's like a vicious circle

I guess I have been lucky that in the 13-14 years since my diagnosis of Systemic Sclerosis I haven't lost anyone close to me. Yes, there have been grandparents and aunts/uncles, but you only get one 'Mum'

Mum had not been ill at all (apart from a cough) but then after troubles breathing was rushed to hospital by ambulance. There was a diagnosis of pneumonia, a collapse, followed by three days 'critical' in intensive care and then she was gone - it was all so sudden and totally unexpected.

During the time spent in ICU I could feel a 'flare up' building but tried to ignore it. I just upped my meds and hoped for the best. Dad has a bad heart and has no idea of my condition, only that I have 'dodgy joints' (the rest is easier to hide) So trying to be there for him I sort of pushed my own issues away and hoped they'd disappear.

Nearly four weeks later the flare up is still here but it sort of comes in waves which I have never experienced before. I know that stress can be a factor with flare ups but really don't know what to do for the best - it's 'Catch 22'. I seem to be coping fine with the pain and limited movement until someone asks 'how are you doing, sorry to hear about your mum' - then the pain kicks up a notch and in my mind I am right back in the ICU saying 'goodbye'

I know it's only been 4 weeks, opposed to the 44 years I had my mum, but I really need to be able to get a handle on this. Dad and my sister have both gone back to work this week, I have a note from my general practitioner for work for last week and this week, then next week I had holidays booked anyway as my youngest son has his university graduation. As long as no one asks me how I am I seem to be ok, but people are 'too kind' and tend to ask quite a bit - it's bad when you're getting to the point where you want to stay indoors (and hope nobody visits) just so you have a chance at feeling 'ok' - but sitting on my own with time to myself really doesn't help either in a way as it's time to think about the last few weeks - it's definitely a 'Catch 22' situation and this flare up is really not giving an inch.

Starting to think there may be a bit of Sciatica in there too as the pain in my back and right hip is 'different' this time (everything else is just the same). I may need to go back to the doctors in case this needs something different. Last time I had sciatic problems was during my first pregnancy and that's going back a 'bit' as my eldest is 26 now!

I really don't know what to do for the best :(

Sorry this went on for so long - thanks for reading :)

San
x

#2 annkd

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Posted 10 July 2012 - 06:27 AM

San- I am so very sorry to hear about your loss. It sounds like you were very close to your Mum. Your post touched me because of the difficulty in getting your flares under control as a result from the sadness and stress of losing a loved one. I lost both my parents within 9 months of each other this past year and then my beloved German Shepherd died suddenly. I think I am still in shock and maybe for you that is playing a role in recovering. I decided that I couldn't handle the stress by myself, or even from well meaning family members, so I sought help from a therapist who specializes in grieving. I am doing much better and the flares, although still close together, the duration of them is shorter. Everyone grieves differently. I just came to the realization that I needed help. I am sending you a virtual "hug" and hoping that your flares lighten up soon! - Ann

#3 Liz Holloway

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Posted 10 July 2012 - 08:25 AM

Hi San
Please don't apologise for "going on so long." I am so sorry to hear of your loss. I agree, it's a very big loss & takes some recovery time. I can understand the shock you must have felt. Although my mother was already in hospital having broken her hip, I did not expect her to have a fatal heart attack during the night. There was no time to say good-bye & the shock was tremendous. I was in a daze for months, but don't remember any flare-up. I'm sorry you have this problem to deal with as well as everything else. Keeping it to yourself must be stressful too. It would be great if you could "keep busy" but that requires those resources you are probably short on a the moment.
Would it be worth mentioning this to your doctor? Some surgeries have 6 weeks free counselling sessions but no doubt there is a waiting list so not much help. Have you thought about phoning Cruse Bereavement Helpline? There is the Scleroderma Society helpline too. No-one on the helpline has medical training but sometimes even a chat can help.
I hope you will continue using the Forum to let us know how you are getting on.
Liz x

#4 Joelf

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Posted 10 July 2012 - 09:26 AM

Hi San,

I'm truly sorry to hear the sad news about your mum; small wonder that you've had a flare up as unfortunately a stressful situation such as you've experienced can certainly cause Scleroderma to react very badly. I can empathise with you as my mother has recently been in hospital like yours with pneumonia, although thankfully she did recover, but I know how very worrying the whole situation can be. There is nothing I can say to take away the dreadful sense of loss you must be feeling and (although I'm no expert) you will have to give yourself time to grieve for your mother and certainly not blame yourself if you're feeling all over the place at the moment.

I agree with Liz and would certainly suggest that you go back to your doctor to ask about the sciatica problem you're having and also explain that you are quite naturally still in a state of great shock over losing your mother so suddenly and perhaps he/she could arrange for some bereavement counselling for you, albeit that there might be a bit of a wait before you can see anyone. In the meantime I think I would try to take each day at a time, be gentle with yourself and allow yourself to recover slowly.

Please do post whenever you feel the need to unburden yourself or would like a sympathetic ear to listen to you, as we are fellow sufferers of this bizarre disease and so can understand perhaps better than your friends and family how difficult it is to cope, particularly when you're trying to be strong and positive for the rest of your family. You are not on your own and we are all here for you.

My very best wishes to you,

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#5 Amanda Thorpe

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Posted 10 July 2012 - 09:40 AM

Hello San

I am sorry your mum has died and it is this emotional stress that is behind your flare in my opinion. I know that our emotional state can affect our physical health and I am not surprised you're having a sciatica flare either.

Even if you know someone is going to die you can never prepare for how you are going to feel when they actually do.

Grief is such a personal process, different for everyone and all you can do is go through it until it becomes bearable. At some point you may want help as in counselling which I highly recommend. Elisabeth Kubler Ross identified the 5 stages of grief, denial, anger, bargaining, depression, acceptance and we can go through all 5 in 5 minutes. Being aware of what is going on is going to help you and others while you go through this. Tell people you do not want to talk about it, before you go back to work tell your manager to give the heads up to your co workers so they don't talk to you about it.

There is no right or worng when it comes to grief so don't censure yourself, be kind to yourself and go with the flow.

At least you had a good relationship with your mother which you can remember, not everyone has this.

Take care.
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#6 tisonlyme

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Posted 11 July 2012 - 03:41 AM

Thanks so much for the advice ladies

Being so wrapped up in the pain from the flare up, talking about what happened and counselling never even crossed my mind. I have been in touch with my boss this morning and our company has an employee support programme so I will be giving them a call. That it all happened so quickly really knocked me sideways. One minute we were joking about hospital food and if there were any 'religious/cultural grounds' for mum to have chicken and chips for her lunch - the next she was sedated and on a ventilator.

I have a friend, of over 30 years, who lost her mum very suddenly 15 years ago. She is also one of the few people that understands my condition. When I was first diagnosed she went out of her way to speak to different specialists to find out as much information for us both as she could. That she actually knew one of the guys on your Scleroderma Experts list was amazing, he ended up as my rheumatologist up until he retired about two years ago. During the 4 days mum was in hospital we had constant texts going back and forth, that she works in an intensive care unit herself helped me to understand what was going on. I have ‘orders’ that I am to call her when I am ready to talk about it all, I think I may need that more than I realised.

Thanks for giving me the nudge to ‘see straight’

xxx


#7 Amanda Thorpe

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Posted 12 July 2012 - 11:02 AM

Hello San

That's great about the employee support programme, you should make use of all support, kindness and anything else that helps you. Your friend is worth her weight in gold and I am glad you have her.

Take care and please keep in touch with us.
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#8 Shelley Ensz

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Posted 12 July 2012 - 05:07 PM

Dear San,

Please accept my condolences on the loss of your mother. I am very impressed with the fact that you are mustering your resources now to learn how to cope with this major, sudden and unexpected loss.

I have found that grief is quite a taskmaster. Somehow it insists on holding our feet to the flame until we have mastered the life lessons it is intent on teaching us. To heal from it, we cannot shirk from any phase of the grieving process. Like Amanda says, we can sometimes get through the whole process in five minutes, and when we manage that it doesn't mean that we lack love or depth or caring. Sometimes all it means is that we've had advance warning and managed to work through nearly every stage ahead of time; or it means we have already learned we have a special knack, in general, for making peace with things we cannot change.

But if we get stuck in any stage, we might never really recover. Sometimes we are basically so nice and kindhearted that we find it difficult to even acknowledge the anger stage (not to mention get through it), and then much as we like, we can't get to the much-envied stage of peace and acceptance.

I don't know about you (we are all so different when it comes to handling grief!), but I have found that I have to force myself into the angry stage. I do it by saying (to myself) that I feel hurt because....fill in the blank...because I didn't have a chance to say goodbye, because we didn't get one last hug, because I forgot to tell them such-and-such, because I regret having said or done such-and-such. And I keep on until I can't think of any more hurts or regrets. Then after each one I say, "Let go" and picture myself turning that hurt over to the loving hands of the universe. If other hurts pop up at other times, I acknowledge them and follow it with "Let go".

In other words, I give myself permission to feel hurt and angry, and then I give those feelings away every time they return. They are not mine to coddle until they turn into a grudge or "bad-ittude". Otherwise, they stay bottled up inside, increasing our stress, and worsening our health problems.

I'm not saying this will work for you, or even anyone else. I can only say the same process has helped me over life's challenges many, many times, including the loss of my parents.

Here's hoping that you can find a process now that will comfort and guide you through your grief. You can't RUSH the process, but you can HELP the process by understanding that it is a process, and working with it. And meanwhile, come what may, we are all here for you. May you soon realize that the sun is still shining...for you, on you, and within you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#9 tisonlyme

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Posted 11 October 2012 - 08:53 PM

Hi ladies and thank you once again for all of the advice and the 'nudge'.

I finally managed to get my flare up under control and get my head straight enough to go back to work at the start of August. Going back to work was really hard, people are just 'too nice' and well intentioned kind words just 'set me off again' My 'coping' was to sit at my desk, headphones in and some nice chilled music to provide 'white noise' just so I didn't have time to think and just get on with all my reports and things. Still having some difficult days but it's getting easier. A recent meds change and 'new diagnosis' has me a bit up the wall at the moment but hopefully that will sort itself out - or be sorted.. I'm calling the hospital later today for a bit of advice on that one

My dad, sister, hubby and I are all off to Scotland at the end of this month to scatter some of mums ashes in one of the places she really wanted to visit but never made it to. It's going to be the second trip 'up North' for dad as he and his sister took mum to Dunoon in August and scattered some ashes there too. Dad was a drummer in a Scottish Pipe Band when they met so most of their first 18 years of married life were spent in Scotland at weekends at band competitions. Seems only right she should go to some places that made her happy. Dad is much better too now after a few heart scares (and hospital stays) in the last few months, I think it is helping him too to go back to the places where they were in happier times.

San
x

#10 Joelf

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Posted 12 October 2012 - 07:54 AM

Hi San,

I'm glad to hear that you're feeling a little better now and are managing to cope with even the difficult days. I find music very helpful as well (particularly something I can sing along with, although I realise that could prove a bit awkward at work! ;) :P ) and always have some on in the background whilst I'm working at my computer.

I do hope that your visit to Scotland with your family at the end of the month is enjoyable and therapeutic for all of you.

Kind regards,

Jo Frowde
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#11 Amanda Thorpe

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Posted 12 October 2012 - 03:38 PM

Hello San

I am so glad you've been able to go back to work! As difficult as overly nice colleagues are think how much more difficult difficult ones would be. Ma continued to work after 2 heart attacks and one colleague used to complain that Ma got special treatment, she used to complain to Ma and it wasn't true! People can be pathetic for sure.

Take care.
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