Wiebke's Journey

A bit more processing now that I am starting to come out of what looks increasingly a scarily close shave with an exhaustion burnout from serious sleep deprivation and nonstop high stress.

It's another totally weird ride (I just seem to be totally unable to do things the normal way) but this one is a good one - I promise. This is Wiebke taking control and fighting back with everything she has learned as a teacher and on this forum... Hospital really didn't know what had hit them! :)

Rachel had been moved to our ward from another hospital for end of life care over being amputated because of one of the superbugs. She was fighting like a wounded animal with being nasty as well; but considering the amount of sheer pain she was in and what she was facing it was understandable. However, being right next to her having a kind of wake with friends going on hours after the end of the official visiting time while I was grappling with the just received bad new was pretty unbearable for me and it caused my first meltdown.

However, somebody must have had a bit of talk with her because she was polite when the curtains were eventually removed and we actually had some interesting talks about neutral subjects.
That evening she was on the phone to a close family member. Afterwards I told her: You have said all the right things; with a big thumbs up. She welled up and answered: I am sent to a bl**dy hospital to die when I wanted to go to a care home and it is the best place I have been in all the time...

I am so thankful that I could give her this precious moment because she sadly took a turn for the worst and was moved out again to pass away the following day as news kind of seeped through to the ward. She was a strong women; so much potential and so much raw pain. :(

But I started increasingly running the emotional needs side of the ward; especially once I was able to leave the bed and visit the others. We had really good talks; women talks about things none of us would ever speak about or would have thought to speak to others but here in this environment they could be talked about for the first time. We had laughs as well and lots of mutual cheering on. I would go and sit with each of them - even if it was just to hold the cold hand of a Indian woman who struggled with speaking understably and was very upset until the body had warmed up.

The empathetic pressure in the ward went down a lot. Many staff were smiling more. I am not an angel; this was self-defence. But we had the best ward of the whole hospital to be in in terms of morale.

I tried to find something to cling onto in the middle of the pain for each of the other women by chatting with them, depending on what turned out their deepest connection, in order to help them in their very worst moments.


Hub did eventually turn up with the eye mask and the ear plugs, which were a life saver. I got the nurses to accept my out-times when I wanted my curtains pulled. If they were wide open I was ready for business. And I finally got them to understand how sensory overload works. The radio near my bed stayed silent and was not turned on again as soon as the next person came into room. There was only ever one halfway snide remark; but then there always is one.

If I can run a forum I can obviously also run a hospital ward... Thank you for all the training you have given me over the years! It has been truly a life saver. :clap:
 
Wiebke said:
A bit more processing now that I am starting to come out of what looks increasingly a scarily close shave with an exhaustion burnout from serious sleep deprivation and nonstop high stress.

It's another totally weird ride (I just seem to be totally unable to do things the normal way) but this one is a good one - I promise. This is Wiebke taking control and fighting back with everything she has learned as a teacher and on this forum... Hospital really didn't know what had hit them! :)

Rachel had been moved to our ward from another hospital for end of life care over being amputated because of one of the superbugs. She was fighting like a wounded animal with being nasty as well; but considering the amount of sheer pain she was in and what she was facing it was understandable. However, being right next to her having a kind of wake with friends going on hours after the end of the official visiting time while I was grappling with the just received bad new was pretty unbearable for me and it caused my first meltdown.

However, somebody must have had a bit of talk with her because she was polite when the curtains were eventually removed and we actually had some interesting talks about neutral subjects.
That evening she was on the phone to a close family member. Afterwards I told her: You have said all the right things; with a big thumbs up. She welled up and answered: I am sent to a bl**dy hospital to die when I wanted to go to a care home and it is the best place I have been in all the time...

I am so thankful that I could give her this precious moment because she sadly took a turn for the worst and was moved out again to pass away the following day as news kind of seeped through to the ward. She was a strong women; so much potential and so much raw pain. :(

But I started increasingly running the emotional needs side of the ward; especially once I was able to leave the bed and visit the others. We had really good talks; women talks about things none of us would ever speak about or would have thought to speak to others but here in this environment they could be talked about for the first time. We had laughs as well and lots of mutual cheering on. I would go and sit with each of them - even if it was just to hold the cold hand of a Indian woman who struggled with speaking understably and was very upset until the body had warmed up.

The empathetic pressure in the ward went down a lot. Many staff were smiling more. I am not an angel; this was self-defence. But we had the best ward of the whole hospital to be in in terms of morale.

I tried to find something to cling onto in the middle of the pain for each of the other women by chatting with them, depending on what turned out their deepest connection to help them in their very worst moments.

Hub did eventually turn up with the eye mask and the ear plugs, which were a life saver. I got the nurses to accept my out-times when I wanted my curtains pulled. If they were wide open I was ready for business. And I finally got them to understand how sensory overload works. The radio near my bed stayed silent and was not turned on again as soon as the next person came into room. There was only ever one halfway snide remark; but then there always is one.

If I can run a forum I can obviously also run a hospital ward... Thank you for all the training you have given me over the years! It has been truly a life saver.
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You are always thinking of others even when faced with challenges of your own. That makes you a really remarkable and special person. :inn:
 
Always thinking of others even when you’re not well yourself ❤️

The ladies on the ward you were on were lucky to have you especially Rachel, bless her, I’m so sorry she lost her fight 😞 x
 
Claire W said:
Always thinking of others even when you’re not well yourself ❤️

The ladies on the ward you were on were lucky to have you especially Rachel, bless her, I’m so sorry she lost her fight 😞 x
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So I am I. Valerie from across the ward (the sweetest old lady imaginable although she has a hidden feisty streak running deep down) and I were going to hold our own little wake for Rachel with our evening mug of tea when she (Val) was suddenly moved on to a respite care home without any warning. I was rather upset!

But we had a bit of a talk about Rachel when we organised that in the afternoon, so her passing has not gone totally without notice... :tu:


What I have been doing on the ward was not all that dissimilar to the soothing and comforting religious volunteers do; only that I am decidedly secular and much more practical. This need to nurture and my empathetic instincts as to hearing with my heart as well as my ears/eyes are - as I now know - totally genuine and reliable; and they are an integral part of myself.

I will however radically block anybody who thinks they can just use, abuse or manipulate/emotionally blackmail me at their own convenience; I have learned that lesson way back in primary school and stopped playing those games way back then. You need to treat me with the same normal respect that everybody deserves (I don't like flattery, either) - or you'll get my Angel with the Sword side, which I warn you is rather formidable as well. :)

I have long since worked out the balance between protecting myself and giving too much; or I would not have lasted long as a teacher and especially here on the forum. I also have had two fierce protectors with me in the form of @sport_billy and @BossHogg who have both been taking great care of me and often warned me early on whenever I needed to take a step back and look after myself first; sometimes even before my own internal red alerts went off. :)

And I have the iron rule that I only post if I do not feel stressed by a post; I either can get a handle on it after some thinking through or I will stay away if at all possible. Especially if I am not well.
You'll usually notice if I break that rule and there is the odd funny post... But part of what makes this forum so great is that we all look out for each other; including behind the scenes. ;)

If you are a carer, the first commandment is to look after yourself. That is not selfish. After all: Who is going to look after you and those in your care when you go down? You are a limited resource that needs to be kept going at optimal flow; it is always about management.
 
Update: I am happy to report that I have had a classic needle aspiration biopsy today; making me feel very much like a guinea pig in a kind of weird way because that is how I usually come into contact with these things. :D

So my 'not quite yet cancer journey' (but active enough to scramble my body) is getting underway. Results should come in sometime in January when I will hear more about the type and any treatment options. In view of me having various bumps and lumps in my body, some sort of chemotherapy is most likely in the offing in the coming year.
Until then I will have to live with steroids (thankfully down to a quarter of the initial dose now) and moving on a wobbling sailing boat in the meantime. There are much worse things. Had I had a stroke instead, I wouldn't be in a better place to be honest; just facing different challenges. It is all relative. And can be worked around. Thanks, autism. It is my super-power for finding practical solutions... :)

Since nothing on the cancer side is under my control nor have I got any personal choices to make for the time being, I continue to focus on my hip/exhaustion recovery and establishing as comfy and independent a new home routine as I can. It is however a great relief that I am now 'in the works' on the medical side. 👍
 
Claire W said:
Glad today has gone well. I have been thinking of you ❤️

All the best for your crutch training. Better late than never I guess

Try and get some rest x
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I am a great one for life skills. You never know when they come in handy! The crutches will come back into play when I am having chemo so it is worth learning it properly and not having to work out things for myself all the way.

So far, I've only been once up the stairs and then down again once while in hospital.
 
Merab said:
Hope the crutches training goes well
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It should. It is just memorising the step patterns on the stairs, how to use the combined crutches as a stabiliser for standing up and how to properly reverse park yourself against any chair with the same principle as a zimmer frame. Exercise helps with the memorising process.

I managed to get in and out of our car in very good style today. :)
 
Wiebke said:
Update: I am happy to report that I have had a classic needle aspiration biopsy today; making me feel very much like a guinea pig in a kind of weird way because that is how I usually come into contact with these things. :D

So my 'not quite yet cancer journey' is getting underway. Results should come in sometime in January when I will hear more about the type and any treatment options. In view of me having various bumps and lumps in my body, some sort of chemotherapy is most likely in the offing in the coming year.
Until then I will have to live with steroids (thankfully down to a quarter of the initial dose now) and moving on a wobbling sailing boat in the meantime. There are much worse things. Had I had a stroke instead, I wouldn't be in a better place to be honest; just facing different challenges. It is all relative. And can be worked around. Thanks, autism. It is my super-power for finding practical solutions... :)

Since nothing on the cancer side is under my control nor I have got any personal choices to make for the time being, I continue to focus on my hip/exhaustion recovery and establishing as comfy and independent a new home routine as I can. It is however a great relief that I am now 'in the works' on the medical side. 👍
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I hope you have recovered from the biopsy, it must be very painful having a needle stuck in oneself for such a thing. I hope the results will be as positive as they could be, when they come.
Quite some time ago, a retired doctor friend told me about a parasitic disease that can be transmitted by guinea pigs if one is in close contact with them when they are carriers, which causes cysts in the brain. The name sounded something like cystic sarcosis... Maybe there's a possibility your lumps could be that rather than tumours?

In the meantime, maybe when SuperMario is getting out of control, what you need is a bit of this to counteract him - What made you happy today?.
😄

On the subject of Autism, we have some books on Autism/Aspergers which my OH bought when he was diagnosed aged 60, you would be welcome to borrow them if they would be of interest to you.
 
Qualcast&Flymo said:
I hope you have recovered from the biopsy, it must be very painful having a needle stuck in oneself for such a thing. I hope the results will be as positive as they could be, when they come.
Quite some time ago, a retired doctor friend told me about a parasitic disease that can be transmitted by guinea pigs if one is in close contact with them when they are carriers, which causes cysts in the brain. The name sounded something like cystic sarcosis... Maybe there's a possibility your lumps could be that rather than tumours?

In the meantime, maybe when SuperMario is getting out of control, what you need is a bit of this to counteract him - What made you happy today?.
😄

On the subject of Autism, we have some books on Autism/Aspergers which my OH bought when he was diagnosed aged 60, you would be welcome to borrow them if they would be of interest to you.
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Thankfully no real pain beyond some minor discomfort due to the local anaesthetic - and that was about on the scale of the daily blood thinning injection I have to give myself in the belly every day right now. :(
No pain afterwards past occasional pain from the dressing over the lymph node. Beyond my 'several areas of concern' in the brain I do have a collection of lumps that are not quite cancer yet in some areas of the body.

Chances are much higher that it is all the same thing spreading through the body but the lab tests should bring clarity.

Yes, I would be very interested in learning more about autism; it's on my to do list once things have settled down. One of my neighbours is also autistic and she has asked me whether I would like her to visit as soon as I feel fit enough.
For me, admitting to and consciously channelling through my new autism side feels like I have gained an extra superpower to help me navigate my journey and get control over my life back. It is making me feel whole in a way I have never felt in my entire life.
 
Crutch training should be taught to us all so that when we need it, we already have the skill. Good luck with that Wiebke - I’m sure you will soon be able to go up & down steps safely again.
 
VickiA said:
Crutch training should be taught to us all so that when we need it, we already have the skill. Good luck with that Wiebke - I’m sure you will sin be able to go up & down steps safely again.
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Thanks. I totally agree!

I have been up and down the stairs safely and without supervision for two days now, ever since I felt that my left hip was strong enough to cope with me using both the bannister and the newly installed handrail (courtesy of hub himself), which is much safer for me from the wobbles point. I still have to take it step by step and need to stop for refocussing if my 'wobbles' become to strong but a dual grip is really safe.

I have taken to making each stair journey with a sling bag back over my back so I am constantly ferrying stuff between upstairs and downstairs without having to ask poor hub for favours all the time. It's giving me a lot more independence back with all the little things.

Usually I tend to forget at least one crucial thing, so it is still hub to the rescue at least once or twice a day, though.
 
A month ago I suddenly had my left body side increasingly scrambled and broke my left hip as a result when my leg suddenly gave under me.

What was actually much scarier for me that upon arrival in hospital (in an ambulance in the middle of the night) the fingers of my left hand had literally lost contact with the brain and were not responsive. I was suddenly unable to even grasp a glass of water with my left hand; my fingers quite literally did not know what to do and there were other areas on the left side of my body that were just no longer there as far as my brain was concerned.

It has taken a while for things to slowly come back over the two weeks in hospital due to a high steroid medication swelling down my brain but I spent a lot of my time being stuck in bed with my hip replacement operation thinking into my fingers and doing plenty of fine motoric exercises; knocking lots of things over with them ending up well out of my reach on the floor was the less enjoyable aspect of it...

I am not quite 100% back but I am thankfully mostly there again and can again use a keyboard with my left hand without having to think about it but it has been quite a journey. Getting the automatic control of over my left side of the body back has made my return to the forum so much easier. Being part of this community is such a vital lifeline for me.

The 'wobbles' (my balance issues) are still there and come and go but they are not quite as bad since I have reached my current lower maintenance dosage for my steroids and am very slowly gaining in strength and stamina.

Being able to roll and bake my Swiss chocolate balls has been my aim for working my way back to a 'normal' Christmas. It's the symbol of my fight back and my recovery journey even though it has taken me a lot longer to assemble everything with a zimmer frame, my special chair and to form the balls but I have done it! And jolly good they taste, too. :)

So yes, I am very proud. It is a big psychological hurdle taken. Christmas biscuits are the Swiss tradition that I have never given up here in the UK, not just for fundraising but also for eating myself over the holidays. :)

DSCN6649_0940.webp
 
You are doing amazingly well in such a short time. I am so pleased you managed to make your biscuits. I am also pleased to hear your steroids are being reduced gradually, going straight off steroids is awful, one of those lifetime experiences I'd never want to repeat!
 
Well done that’s brilliant to hear. Enjoy them (they look delicious). X
 
Well done Wiebke. Always good to have a goal (and smash it like you’ve just done).
 
piggieminder said:
You are doing amazingly well in such a short time. I am so pleased you managed to make your biscuits. I am also pleased to hear your steroids are being reduced gradually, going straight off steroids is awful, one of those lifetime experiences I'd never want to repeat!
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I have had to thankfully gradually reduce my steroids with the help of a chart since my return from hospital. My 'wobbles' (which make me feel like I am living on a sailing boat; they are much stronger after any exertion or when I am sitting up for longer) have got worse during that reduction. I would not want to go cold turkey on steroids, either. Poor you! That must have been horrendous! :(
But I am still not sleeping much and a lot of my 'London' brain fog/off and on memory issues has to be attributed to that, I feel.

Anyway, I can fully look after myself again now and can get on perfectly adequately with my current level of mobility. I am about where I wanted to be at this stage of recovering from what is a serious operation. We are creating a daily routine. There are jobs that I simply cannot do; that is fine. There are jobs hub is struggling with or which he cannot do. We are finding other solutions for those but we have got the main bits of our old life back together in time for Christmas... And that is going to be our Christmas cheer. :tu:
 
That’s great to read ……you are an inspiration to us all Wiebke
We are so lucky to have you on this forum ❤️
 
Great to hear that you are busy and getting things done. Enjoy your lovely biscuits! 🌲❄️⭐
 
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