Meltdown

Well i don't think I will be getting another face to face for a while if they can help it and I am wondering whether it is for the best too. 

The appointment is always a late one and as we were the only ones there I decided to be more open about the problems I am experiencing. The shortness of breath the passing out the abdominal pain and lack of sphinxter control. He was unable to shed much light on my lung condition but has wrote off to ask if a referral to a lung specialist would be appropriate. He is also requesting a CT scan now of my abdomen. He is also trying to sort out the sickness with the Pallative Care Nurse as I just cannot keep the meds down so am dehydrating rapidly. He did suggest I go into the hospice for a while to get meds sorted that I can tolerate. I am not wanting this especially as the C19 figures show hospice deaths are quite high still and also I am not sick all the time so how would you pick when to go in. I feel I am being quite negative I know but I also feel you need to look after you and I have had terrible experiences in the past. 

As it happens the talking and then the walking out of the room completely drained me of air and I went down completely out of it. By the time I came round a crash team had arrived I was tied up to all sorts and a cannula sited. I had hit my head quite hard but apparently I had no pulse for a while, which was causing most concern. I have to say my flight response kicked in big time and all I wanted to do was escape. After a severe talking too and my husband being frightened to death we agreed to be taken to A&E as I was.told I needed a scan and to stay in over night. We arrived and it was empty my husband was not allowed to stay. After 4 hours I eventually saw a junior doctor who concluded because my blood pressure was now high, but had not been earlier, that I had just stood up too quickly and a change in blood pressure had caused me to faint. I know I had not stood up quickly, I know my blood pressure was fine, I know I had lost pulse then been tacacardic, I also knew I had no perifferral vision on the right side and a lump on my head. She then said I didn't need a scan and I could go home. An hour later she reappeared to say her senior had said I needed chest x-ray and scan so they were sorting that out. 6 hrs after arriving I finally got to the scanner. It only took an hour for the results and I got released just after midnight. 

Lungs still the same as last scan but head scan clear so at least that was good news. I did ask if they could do abdomen at same time save me going back but of course that is not allowed. I also found out that there are anti sickness drugs you can put under your tongue so I am going to try those. Even if that works it will have been worth the time in A&E even if I am still no nearer finding the cause of my passing out. 

My daughter advised that I make sure I left the hospital in a chair so I actually made it to the car this time. Which was good advice as once I got off the bed I realised I was still very breathless. 

I am very floaty and puddled today and must have caught my rib also in the fall but at least I got home to my own bed. The most infuriating thing is that I know it will be recorded that it is high blood pressure causing the problems, as on other occasions, when I don't have high blood pressure unless I am in A&E or on a ward. It is very much a case of hitting your head on a brick wall and the clinic doctors don't understand why you don't want to go to A&E. 

I am hoping that something will happen to make things better as it is terrible just going down like that. In the house it is not too bad as the carpets soften the fall and I just stay where I fall until I come round. Even my husband is getting better at coping with it but outside people panic, even doctors and nurses it seems, and there are dangers such as hard floors, escalators, cars to deal with. In one shop I just went to pick something up fell over the shelf and somehow managed to get wedged between displays and they had to dismantle it with me unconscious in the middle. I am very concerned that if a solution can not be found I am going to be stuck indoors forever. 

Tomorrow I may be able to laugh about it but today I just find it annoying. You notice the absolute wastage in the NHS is unbelievable, especially at this time when care homes are crying out for medical help and resources, when you are just sat there waiting. 

Good luck to the rest of you with appointments and problems I hope you get solutions or at least understanding. 

Hi Maz

You don't do anything by halves, do you? I was reading your post with my mouth open most of the time. Each time I thought you were finished another calamity popped up. So many concerns for you, your husband and daughter. 

I must admit my mouth closed and a half smile came over my face as I read the bit where you were stuck between the displays then it hung open again when I saw you were unconscious! Bet the staff couldn't wait to get home to tell the other family members. 

I'm not surprised you don't want to go into a hospice right now with so much Covid19 around. Stay clear. I wouldn't want to go anywhere right now and that includes hospital.

Maz, I hope you can get the anti sickness tablets because there's no point in becoming dehydrated and also you're not getting the medication you need if it's ending up on the floor. I have been taking some anti sickness tablets for 4 years now because of the mixture I'm having every day, up to the high twenties daily. Even still, they cause a stomach upset if I don't get food either before or straight away afterwards. It isn't always easy to get them down immediately and there's one wee beastie that if it sits in my mouth too long, like 5 seconds, it dissolves and  tastes vile. Yeugh! Aren't we all having fun? 

Look Maz, try to keep out of trouble! If I could help you in any way, I would. All you can do is keep eating good nourishing food and get out into the garden for fresh air. 

Take care and stay safe Maz.

Tvman xx

Oh Maz

I don't know what to think or say. Do you feel as if anyone is listening to you? The past few months seem to have been so stressful for you. 

X

Thanks TV man 

I must be getting better as I can smile about it now and all you can do is keep going and hope it does not happen again. 

The worst one was.on the escalator in the middle of the shopping centre as my clothing got caught in the top of it and one poor man actually fell on me. I was totally oblivious to it all of course but there was quite a crowd. Then there was the pregnant lady in the doctor's surgery who tired to catch me as I fell she landed on top of a gentleman who dropped his sample bottle and it leaked over the floor the whole place was in disarray as I woke up on the trolley being taken to the ambulance. 

Needless to say I am keeping well clear of cliffs. 

I think I have come to the conclusion that they are now choosing not to acknowledge what they see and what I tell them because they have no idea what to do about it. At first they think ABC equals D but when that it proved wrong then they can't bother to look for the less easy answer. I also do think that having the Cancer terminal diagnosis puts you further down the list for any resources. I am not even complaining about that I can see why chasing something for someone who may not be here to benefit from a discovery could be seen as a waste. What does get me though is when they come out with you stood up too fast and caused your blood pressure to rise when you know it is rubbish and if they read the notes they would know it is  rubbish. I would rather they said we have no idea what is happening and no intention of trying to find out. 

Moaning over now folks bright side is I am home and seem to be getting better as the day progresses. 

Like everyone else Maz I do not know what to say. What a terrible experience but I know you are used to that.

Could I dare to say that a week in a covid free hospice might give you both a break and would allow some more time to be spent on getting you sorted.

I can only speak of our local hospice in Crawley, a nice and special place.

You are not being written off by the medical mob by any means but you are presenting them with a few conundrums and I suppose they just cant be as sharp as we would hope.

Please be very careful until you get your wind back. Xx

Hi

Like others, I am lost for words. I am torn between thinking how brave and determined you are to keep on getting out and about despite knowing you are likely to hit the ground at any minute and wondering whether it’s actually irresponsible getting yourself in a situation where getting on an escalator is necessary. 

I am also wondering about your approach to the virus risk. Personally I am avoiding shops and other public places as I am following the shielding advice. If I needed symptom control then I’d go to the hospice to get help with that. It’s entirely possible I have misunderstood somewhere along the lines though. 

But all that is just late night musing. I wish you could find the help you need to get back on your feet. 

Lots of love xxx

According to the latest reports, the infection rates are higher in nursing homes, care homes, hospices, etc than they are on the street. This is because someone thought sending patients back to these places while still sick was a good way of freeing up hospital beds, as they could be cared for by the in-house staff. 

So she'd be at high risk of catching it by going to the hospice, so it's probably a wise decision to steer clear.

L

Xx

Sorry for the misunderstanding here.

My exploits outside were historic when the collapsing first started. My recent ones have always been at home or in the hospital while on appointments. 

No I am very much on lock down since being in hospital in n Jan and Feb this year other than twice round the block to test a wheelchair and two hospital appointments my home and garden are my stomping ground. 

Thankfully I am still getting good days and can do some little jobs.but that is it. I do long to get out into the countryside and a ride out in the car with my husband and hopefully soon my son or daughter may be possible. I gave up driving some time ago also just in case anything happened although thankfully that has never been an issue. 

So please be assured I am very mindful of others and definitely not breaking any rules. However I also do not want this to make me bed bound so I am doing what I can and unfortunately my poor husband has to pick up the pieces or more often me and pop me out of harm's way till I come round. 

I spoke to the Pallative Care Nurse yesterday and she advised I definitely avoid both the hospital and the hospice at present for anything other than life threatening issues. She also is going to look into why they made such a fuss about me going to A&E and putting my husband under such pressure when last time they did a DNR form saying if I did take ill in the community I was to be taken home and not hospital. She said she is finding it confusing. 

 I am still rather wobbly  with no idea what is going on but I did manage to eat a meal yesterday with fluid and my abdominal pain is not as bad. I feel like I have crashed and burned now I am awaiting the rising. 

You take care Daloni