ITP Support Association

Past trauma effects on ITP - update

So, in response to a number of you asking me to keep you posted regarding my last post on whether past trauma may have an effect on ITP, here's where I'm currently at!

I have found that it is more difficult to get professional help quickly than it would ideally be! However, the world is not ideal in it's current state nor is life fair, so while I wait for an appointment with a counsellor, to take a look at how I've handled past trauma's and fears, I've been "noodling" (my term for contemplating!) and researching.

I found this TED talk (link below) interesting. I've always been a "glass half full" person and I tend to jump quickly to leaning on understanding of why something may have happened, seeing the bright side and forgiving. Moving on has been something I've seen as extremely positive, and I still think to some extent this is good. However, "seeing the bright side" and refusing to allow negative emotions to have their moment in recognition of whatever causes them, doesn't give them the weight they merit in reality, and I guess, it's totally plausible that if we don't deal with our negative emotions by facing them and bringing them into the light, they deal with us by festering away and eventually causing damage - physically and emotionally.

I wonder if it is more realistic, and indeed courageous, to get to the moving on stage having faced and allowed time to deal with the "stuff" as it occurs.

I would be interested to know how others have dealt with past fears, stresses and trauma's - could it be that we're all a bunch of optimists, folk who "get on with getting on" no matter what, that have shoved negativity aside, only to be subject to it's potency now?

Hope you enjoy this TED talk. It's food for thought.

facebook.com/TED/videos/101...

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Sarah

Thanks so much for this. Like you, I am a strong optimist and tend to get on with 'getting on'. This strange dis-ease has taught me much about stress. We are not the only ones who deny our emotions; because we look whole, so do our 'friends' and, sometimes, family. This, of course, only adds to our stress. I am in the middle of this conundrum; how to deal with unsympathetic friends.

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sharroN42,

Unsympathetic friends are difficult to handle. It can be very difficult to convince others that we are ill when we *look* fine and have moments, hours, or even days when we seem to be functioning normally. When I do research on fatigue, the usual advice is to avoid those people and remove them from our lives, and sometimes that's feasible, but often — especially when these people are family or even our doctors — such letting go just won't work. I often feel, when I am trying to explain that I'm too worn out to do something, that I'm either holding others back from an activity or being left out (again), and the sense of isolation can be overwhelming. But pretending I'm OK when I'm not makes the fatigue vastly worse. There seem to be no good choices, and that makes me pretty depressed.

Ruth

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Thanks Ruth,

I feel that exactly. It is so good to have our online community.

Frankie

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It's awfully complicated. Do you find that when you do share how you're doing with others that they then start to make decisions for you? That people think they're being considerate by assuming you won't feel well enough to decide whether to go out or to be aware of other problems? I run into that frequently.

Ruth

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Hi Ruth,

Yes. You are so right. But I fear it goes deeper. I don't think I concentrate on my ailments; in fact, company and conversation usually helps me forget them to some extent. Friends have said things like "I didn't think you'd be interested" thereby making the choice for me. You begin to wonder, "what is it about me"? Interestingly, new friends are more sympathetic.

These are people I've met through an energy healing group. The group is led by a person certified in the Donna Eden energy healing system. It seems a little 'wooo-woo' but I believe is helpful. Because she was very ill, Eden developed the system by travelling and studying health protocols around the world. Check out her 5 minute energy system on Google.

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sharroN42,

There's nothing wrong with "woo-woo" if it works for you. I don't think there's any one road we all must travel. It sounds as if you've found a group of people who understand through what you are going and have some energy that they can impart to you.

When friends or family decide that I "wouldn't be interested" in an activity, I confess I often suspect that they don't want to worry about whether I'll actually make it or how I'm doing during. And I can understand that. But I really don't like being that person.

Ruth

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Hi Sarah-Fitzgerald, I agree with you totally. I too am a person who'forgets' it and moves on with a big smile on my face. But now I feel it would have helped to deal with the trauma then and there. Because even though we say we have moved on, it is stashed somewhere in the inner mind, and only resurfaces with a vengeance, our body taking the toll.

Thanks for the link.

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Sarah,

Yes, getting the help we need can take time and effort, two resources on which we are especially short when we need them the most! And even when we get help, it can take quite a while to have an effect. It's like the old joke: How many psychologists does it take to change a light bulb? One, but it takes a long time and the light bulb has to WANT to change.)

I agree absolutely that we need to acknowledge and let ourselves feel the negative emotions, but I was taught that I'm supposed to be "tough" and not let whatever problems I have affect anyone around me. I'm terrible at it though, but I keep trying. And as Padram says, our bodies (and minds) pay the price.

But there can be a heavy price for confronting our demons too. Others often don't want to be around us as we go through the process, or don't want to know why we're being a drag. The force of the emotions that we've bottled up can set us back and so letting them out can seem like a move in the wrong direction. And life moves so quickly these days that it's almost impossible to step outside the flow for a while to take care of ourselves and then step back in.

I appreciated the TED talk; thank you. I looked up the full one (the link took me to a shortened version); I liked Dr. David's point that only dead people don't get stressed or disappointed. : )

Ruth

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Oh, SoporRose, how right you are ! No-one wants to help us when we want to confront our demons. And if we have made the mistake of smiling and carrying on, in the beginning, we can never show how we actually feel, EVER. In case we get so overwhelmed and do bare our soul, we will more often be ignored, or ridiculed, no one will even try to understand what we are going through. People with good health can't empathize.

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Hi Padram,

Your reply to SoporRose sounds so sad! Have you experienced being "ignored or ridiculed" when you've tried to bare your soul?

Sometimes baring our soul requires wisdom as well as courage, so that we share with the right person or people.

I think there are folk with good health that can emphathise especially if they've at some stage experienced a time of not good health - like us! I can empathise with people who are sick far more now that I've experienced it myself, than I ever could before, and I don't expect to forget what if feels like as I get well again - as I'm sure you wont.

Seems to me we need to share wisely and not set ourselves up to feel rejected by being vulnerable to the wrong folk - or to too many folk!

It's easy to get fed up with someone who is always moaning, but if we keep our smiles for the masses and find ourselves one or two reliable, caring friends to really share our lows with, I believe we wont find our emotional stress contributing to our physical weaknesses quite as much as they might!

If you have stuff to get off your chest, maybe choose just one person, someone who you trust not to rebuff you cos you're not all "cheery" and smiling. If you really don't have anyone in your life like this, I'm sure your gp could recommend a counsellor who's trained to listen without being judgemental!

Go for it!

Sx

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Hi Sarah, thank my stars , it's not me. But a dear friend, more like a daughter to me, had a terrible time, with her own parents. Another friend, my age, has been rebuffed by her husband. I can give many examples, but finding someone to understand, is not easy. That's why I wrote that may be we who suffer may not be able to bare all.

Thank you so much, for your kind thoughts. Yes, we have to know whom to confide in.

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Padram,

I have been reading two books about depression, one a very funny one (_Furiously Happy_ by Jenny Lawson) and one that's more straightforward (_Just Like Someone Without Mental Illness Only More So: A Memoir_ by Mark Vonnegut M.D.). Both authors make the point that people who are living with mental illness — and I think their point holds for most "invisible diseases — don't get the kind of support that people who cope with, say, cancer get. When we are in a period of higher platelets or less fatigue, no one congratulates us, and when we are experiencing the ravages of our conditions, people don;t know what to say or how to react. It's not that any of us want an even more dangerous illness, but I think a lot of us would benefit from a wider acknowledgement that we too are struggling and are courageous. I understand what you mean about how it's harder if we've first tried to to smile and carry on. It's not unusual for people to then expect that we'll continue to do so or to think that if we could be brave in the beginning, why can't we just keep on smiling?

I think it's hard for people to realize that even if our condition — the trauma, the physical condition, the mental illness — doesn't get worse, it still continues to wear us down. Even a trickle of water will wear down stone over time. In the beginning, we ourselves don't understand how long a problem will be with us or how it will change us, so it's easier to think we can grin and bear it. But after months or years, our resources become depleted, and the grin gets harder to maintain.

Ruth

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Thank you SoporRose. Will read the books and also suggest them for a lot of friends, some of whom don't have an Auto Immune Disorder, now.

For me personally, ITP resulted because of Yellow Fever Vaccine. This is a Live vaccine, which people with Auto Immune Disorders should not take. I didn't know I had RA, for a very long time, wrong diagnosis because though my inflammation markers were high, I never had a swelling in a single joint. By the time I was diagnosed, my fingers had deformed.

Unfortunately, now, I can't take medication for RA, as because of ITP, my platelets keep reducing. Anyway, I always had chemical sensitiveness, so taking drugs always ended up giving a lot of side effects.

So trying the Elimination diet for the past 2 years. Very successful in bringing inflammation markers way down.

Thank you once again.

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Padram,

The medication I was given for ITP, Rituxan or Rituximab, is, I believe, also used for RA. Have you talked with your doctor about that drug? Most people tolerate it quite well, though I developed lasting fatigue after taking it. On the other hand, my platelets have been stable for almost five years. I go in for another count at the end of this month.

Like you, I am also hyper-sensitive to chemicals and medications. It makes it really difficult to find a path to health. What foods have you eliminated?

Ruth

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Hi SoporRose, after taking steroids, and suffering from side effects very badly, have decided to go off medication. I live in India. I take vitamin supplements:

Vit B C and D

Calcium with K2

Papaya leaf tablet to increase platelet, I maintain itat around 50 k with this. No side effects with this. Am taking for 2 years now.

Diet eliminated:

Gluten, dairy, sugar.

Diet I take regularly:

Am a vegetarian, so easy to follow this.

Veggie juices, leafy green juice

Walnuts 5 every day

Rice based food, quantity, max one cup.

Lots of boiled veggies

Fruits.

Meditation:

Chakra meditation

Singing bowl meditation

Happy to say:

CRP now less than 3, it was above 150

RA factor now less than 40, it was above 200.

So don't want to take meds at all.

I crochet, I am able do most of the house work, I am more energetic, walk for 2 Kms, I am enjoying my life now. 😀

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Hi Padram,

I was taking papaya leaf extract but find I puff the stuff after taking. I much prefer amla (or amalaki), another Ayurvedic treatment. Do you make curry dishes? I've learned that tumeric is bad for platelets so no longer take that as a supplement taking it only in East Indian meals (my favourite cuisine!). If you don't use tumeric, what do you use instead?

Namaste,

Frankie

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Namaste. I don't take anything else. The diet itself prevents any inflammation. I have read that cinnamon is good for bones, keeps them healthy. But again, cinnamon is also a blood thinner, so, that is also of no use for me. For platelets, I have searched and searched and searched. Unfortunately, have not found anything so far. Amlaki is very high in vitamin C, I take it too. For people with a good platelet count, but who still bruise easily, their Vit C must be low. For such people, Amlaki does wonders. I use it because I bleed when my count drops to 30 K.

I don't understand what you mean by curry dishes. I do use red chilli powder, coriander powder, cumin, pepper, in my cooking, but in small quantities.

I don't have cabbage, cauliflower, peanuts, cashew. My joints get inflamed if I consume these.

Hope this helps.

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Thanks for this Padram. It seems that all my favourite foods and drinks are on the forbidden list. I also have arthritis and stay away from nightshade plants, especially potatoes which inflame my joints. Cauliflower is my favourite veg. Didn't realize it would cause joint inflamation.

Frankie

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Hi sharroN42, cauliflower is problematic for me. Please check my posts on RA and diet. I have given a list of food items that can be consumed safely, according to the Ayurvedic diet. I follow that diet only.

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I do too meditate and take vitamin c, d and avoid gluten

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Padram,

That's fantastic! I applaud your plan and diet. I need to work on my diet too, especially the sugar. A lot of people have mentioned papaya, but I'm allergic to it (walnuts too), so I won't be able to try that. I also take vitamins.

My mom sent us a large singing bowl some years; I should work on using that. Do have any advice on how to go about that? I haven't found other methods of meditation to work well for me; I think having a focal point such as the bowl might help.

Thanks,

Ruth

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Well, I totally accept that facing demons can seem like an insurmountable mountain, but if we don't conquer those mountains we never get to enjoy the fantastic view from the top or truly be free from those pesky demons! Instead we find ourselves hiding our true selves and becoming isolated and dependant on medication, all for a mediocre existence!

While I can empathise with Padram's view that that "we can never show how we actually feel, EVER", I respectfully reject this notion.

I took a first step this week, and opened up to my younger brother and sister to whom I am usually the rock of strength, positivity and encouragement. To my surprise and delight, not only were they incredibly supportive and loving towards me, my vulnerability strengthened them to be real, and made them feel great to be able to "be there for me for a change!"

What resulted from my risk to be vulnerable was a very helpful and caring conversation between us, which brought a new freedom to be "real" and a bond of relationship to us all, that we haven't previously experienced.

Sometimes appearing to be the "strong" one does us no favours at all when we go through real times of being weak, and can actually dis-courage others, as sadly, we all seem to be in the business of comparing ourselves to others. So, for my siblings, feeling they weren't as "strong" or "positive" as me had become a barrier between real and honest relationship.

I too liked Dr Davids point about the "dead people's values" but realised, that I haven't so much carried those values by trying to avoid failure or disappointment, but when stress, failure and disappointment have come, I've passed over them too quickly, brushed them off as though they didn't matter and now I may be paying a cost I didn't expect!

Ruth, I would encourage you to take small steps towards any vulnerability you may need to deal with - don't be tempted to do everything at once, but one small step at a time will surely make a difference.

Rooting for you!

Sarah x

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Good for you,Sarah, very happy that you have a positive response. This in itself will surely help you in your journey to wellness. All the very best to you, dear.

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Thank you Padram! Only just seen this response - you're very kind. I really hope you can find someone to really share your inner feelings with Sx

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Sarah,

Way to go! I am pleased and proud that you got such a positive response from your sibs.

I think your distinction about the difference between trying to avoid bad feelings and acknowledging them when they come as a result of our experiences is important. Either way, we have to face those feelings and find some way to deal with them, or as you said, conquer those mountains. I never meant we shouldn't face our experiences and their effects on us. But sometimes the advice out in the world makes it sound as if this process of acknowledging our traumas and being open about them is easier and safer than it is, and the shock of rejection or disbelief can be brutal. I know people whose families have forbidden them from raising the subject of their trauma or gone to great lengths to try to convince them that they are making up their experiences. Reactions such as those can be traumatizing in themselves. It's a risk we should take, but carefully and with an awareness that we may have to back off and try again elsewhere.

Thank you for the encouragement. I have been taking many small steps for many years with an excellent therapist. I know the few people whom I can trust. What makes it difficult is that some of the people closest to me don't want to be bothered and are the one for whom I have to put on that false face. It adds to the exhaustion rather than ameliorating it, and sometimes I get pretty angry about being drained like that.

Having your brother and sister step up to help you through is fantastic and will, I suspect, help you recover your balance and some energy very quickly. And as you point out, it provides them with an opportunity to grow and be strong.

And I also agree with your observation that refusing to let down a facade of strength perpetuates the myth that we must all be strong and contained and keep others at a distance. We each have to weigh the risks of revealing ourselves against the possible benefits. It shouldn't be this difficult!

Sarah and Padram, I am very grateful for this discussion and your insights.

Ruth

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Hi Ruth and Padram

I too am very grateful for this discussion and thoughts - I'm going to source some papaya leaf tablets as I've heard many recommend this!

Despite all I've said, I had a tricky day yesterday and ended it in tears! My brother lives in America and flew back Saturday evening, and my sister doesn't live close by either and has a very busy schedule of her own. Thank goodness for FaceTime and Whatsapp - but still wish we were all geographically closer!

After such a fantastic response and discussion with them on Saturday, and subsequent texts and messages, yesterday I had to face the apparent dis-interest of my immediate family. I know in reality its not that my husband and grown up kids don't care, but this situation with me being "poorly" is something they don't understand or know how to handle. They do as I've modelled in the past and "carry on regardless", which leaves me feeling lonely, mis-understood and uncared for! - and yes, a tad angry at times - just like you say.

Isn't it startling how quickly our emotions can swing and a reminder to me not to fully rely on them as if they're always rooted in truth!

The truth is I know my husband and kids love and care for me, but it is also true that they simply don't know how to support me, (why should they?) so they just get on with getting on - exactly what I've taught them!! (think I just said that!)

Hey! I don't want to get into a self pity party, but I am surprised by the many facets this horrible ITP condition is bringing forth in my life for me to look at.

Ruth, it's so encouraging to hear of your many small steps and thank you for sharing about the time you spend with your therapist.

I have spent time with therapists and prayer counsellors in the past, over some fairly substantial trauma's that happened during my childhood, and found them very helpful. However, I'm realising that I've measured subsequent events against those early trauma's, and always found them not quite so bad, so I've failed to acknowledge the impact and run on as if the more recent stresses and strains didn't matter.

I hope to get an appointment with a professional soon! I think I've got some unpacking to do!!

Thanks gals! Here's to a better day today.

Sx

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Sarah,

There's a lot to be gained from venting here! You write "Isn't it startling how quickly our emotions can swing and a reminder to me not to fully rely on them as if they're always rooted in truth!" May I suggest that your emotions ARE rooted in truth, but that truth can change as our moods and physical condition change?

I've been thinking that when we get diagnosed with these chronic, life-changing conditions, our doctors should have our families come in and talk to them and us about our conditions and what they mean. My husband is also uninterested in my health and my children are grown and (mostly) out of the house (my son is thinking about coming home for the summer). It IS lonely, very lonely, but it's hard to be a parent or spouse who feels like a burden or a drag.

I am truly sorry your siblings are so distant. It sounds as if having them closer would get you some of the support you need. Stress plays such a huge role in these autoimmune diseases — at least everyone says so.

I think the idea that things could we always be worse so we ought to be grateful for what we have is problematic. It's not that we shouldn't count our blessings, but we should recognize our misfortunes for what they are and get to do some cursing and crying and have the people who love us tell us we're still wonderful and important and they'll do what they can to help. Otherwise it's like having terrible flu and having to make our own chicken soup.

These illness change almost every facet of our lives and we need the people around us to allow us to make those changes.

I also hope you get an appointment soon, and with a suitable counselor. Having someone to provide some perspective and tell you that OF COURSE you're supposed to be upset about low counts and relieved when they go up, etc., can make a big difference in how you see yourself.

Keep writing!

Ruth

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I totally agree with you, that doctors should make the family understand what we go through, day in and day out. The disorder in itself is creating havoc, and the side effects of medicines is another irritant. It is a double edged sword. So family members must know that we all manage to keep smiling, not only to make ourselves feel better, but also give less stress to the family.

Unfortunately, while family members of cancer patients are given the importance they truly deserve, family members of people with Auto Immune Disorders are not made aware, in a similar way.

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Padram,

All I can do it agree emphatically with everything you wrote. Our illnesses and struggles are often most invisible to the people closest to us.

Ruth

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