Tuesday 26 May 2020

Covid robs Rebel Rev

I’ve been stuck in this small room for two weeks now and I’m definitely going stir crazy. I see no smiles all day because people are all masked up. I can’t have visitors from home and the days just drag. Thank goodness for Netflix

Here’s a vlog giving you a tour around my current living quarters.

https://youtu.be/02WgVn2EY-o







Today is a sad day. It was my uncles funeral and I’m gutted I couldn’t be there to honour him and support my cousin. What makes this so hard is that my lovely aunt died yesterday. She obviously didn’t want to be without him. My heart goes out to my cousin who has lost both her beloved parents within two weeks of each other. I’m so frustrated about not being able to do what I’d like in terms of helping out.

I am also very frustrated by the situation in the hospital. Last week I was told I was having a PICC line put in. At the time I reminded them to mention the stenosis and problems I’d had with having 6 previous hickman lines. The nurse cane and said the porter was on his way. This was 45 mins earlier than expected so I was rushing to finish my daily ablutions and take my meds. Then a nurse came back and said they had just phoned and said they couldn’t do it due to my compromised anatomy. Grrrr. This is just what I predicted.

When Manu the lovely doctor came to see me he said they had now booked me in for the hickman lime for the next day. He said the team would have a discussion as they don’t think that’s the right way to go. It’s a huge problem in some respects. My veins have had it so they do need to get some access to me. Heaven only knows what the solution is.

My phosphate is still needing to be replaced every other day and sometimes daily. They don’t know why I’m not maintaining phosphate so need to try and work out what the problem is. I also seem not to hold on to my calcium just now.

The other weird thing is my BM (blood sugar) gets taken in the morning sometimes. Today it was 2 one day it was only 1 On that occasion the staff made me have some glucose gel. Yet when you do a dip stick urine test it had glucose in it. That normally happens if you have too much globose in your system which is the opposite to the morning problems.

It’s wonderful that our bodies are so complex. It’s hard though when so many bits and pieces are wrong but there is no clear pattern to determine the problems.

It’s really soul destroying to continue to be stuck in hospital when I feel we are not making good progress and getting any answers.

The other issue that’s occurred is that one of my drugs has been misinterpreted. I take mirtazipine. It’s an antidepressant. I take it for it’s side effects, one of which is to create an appetite. Someone from another team has queried this depression and it’s been suggested that I see one of the team of counsellors to check in either the psychologist or psychiatrist. I said I’d do anything that may help but didn’t need psychological support. I did say I wanted a truthful answer to if my current physical state is as good as it gets. If it is, then I will do the work to psychologically adjust. I saw Phil today who is one of the psychologists. I’ve seen him in the past as I’ve come to terms with my diagnosis. He is a great bloke and really good to see if you hit a bump in the road. There was one point where I did feel
depressed and I went to see him. He checked the medications I was on and it turned out to be one of the drugs that was making me feel flat. He spotted it and advised me to change the meds and I was back to normal quite quickly. I trust him and appreciate his insight. Today he confirmed that I was psychologically robust and that wasn’t a problem contributing to my current predicament. If they keep me here much longer that may change. Lol.

I know some of my friends and acquaintances are medics. Would any of you have a clue as to what might be causing me to not hold on to my phosphate and calcium? Any ideas would be gratefully received.

I’d also like some suggestions for a project I could take on. I’m bored and definitely need some stimulation. Any suggestions?

https://youtu.be/02WgVn2EY-o

Thanks for all the kindness and messages. I am with you in spirit even when I feel so far away. Take care and stay safe. Xx

Saturday 16 May 2020

Inpatient frustrations

Hello Everyone,

Here is this weeks blog and vlog. I hope it brings some encouragement to you all.

https://youtu.be/lW5Rsf3PFvw

It seems to me that things are subtly changing. More people are talking about having to learn to live with covid and move our mindset from pandemic to endemic. I’m not sure how we get there but know we will have to move out of social isolation at some point and it will make people really nervous.

The other thing I’ve noticed is that after two months of #lockdown people are beginning to go stir crazy and the cracks are emerging.

My encouragement to you is to not get caught in a rut. If you feel your mood dipping, do something different. Do something weird and whacky. Design an outfit out of bin bags and model it for all to see. Set a quiz amongst your family members. Learn a new song. All these things are distractions but they are also feel good tasks that should bring some light and energy to your days.

I’ve been stuck back in holiday since last tues. I’ve not been in good form for sometime. My muscles are getting weaker and weaker. Yesterday I had some muscle tests. As you can see from the picture the probe went right into the muscle above my knee. Then when the pulse was switched on my foot started to twitch. It was a weird sensation. The two staff members that performed the tests were lovely. I was told at the end that it seems there is a muscle problem rather than a nerve problem. Hopefully I’ll find out this week what it all indicates and what they can do about it.

Since being in I’ve also puked a couple of times. 750mls first time and 600mls next. They were impressed at my substantive up chucks. None can beat last weeks litre. Lol. Because of the increases nausea and vomiting I’ve had a stomach x-ray. While I’m here they also want to remove the PEG J and a polyps and so some biopsies. They also want to do an endoscopy and a muscle MRI. I’ve certainly had my money and then some out of the NHS. It’s an impressive and amazing institution.

The Covid situation makes this stay more challenging. All the staff are wearing masks. This means you can’t lipread and you can’t see smiles. That’s hard! Also no visitors are allowed so it makes the days long and monotonous.

The photos represent different aspects that have happened to me this week. People ask why my personal emoji is purple. The images of the bruises tells you why. Lol. They have tried 7 times to cannulate me today, so far to no avail. They have now sent for an ultrasound and a member of the IV team. I hope they don’t come too late. I need my 3rd 6hr infusions of phosphate since I’ve been in. Phosphate is really hard on the veins and burns and irritates. I also have to have some fluids as my kidney function has gone off a bit.

My philosophy about enduring the storm and climbing above the clouds into the light and warmth of the sun is still very much in evidence. I’m doing my best to keep my spirits up as well as show my love and support to those around me.

I wish you well as you also navigate through these trying times.

I hope you like the vlog too

https://youtu.be/lW5Rsf3PFvw






Sunday 3 May 2020

Stings v Love

We continue to live in strange times. I hope you like the vlog aspect to my general blogging. 

I told the story of the scorpion stinging it’s rescuer because I think life is “stinging” a lot of people just now. We are all struggling with different aspects of #lockdown and #socialisolation. 

My sisters and daughter  are used to being very active and it’s hard to suddenly be stuck at home. Of course on top of their own worries, they worry about me and keeping me safe.  It’s hard for me to be reassuring when the news is constantly reminding us how this disease affects those with pre existing conditions worse as well as those from the BAME community and our fabulous key workers. 

On top of all of this we still have people living with cancer and the consequences of treatment. Many of us have elective appointments for related aspects of our health but they’ve all been put on the back burner so that the NHS can, quite rightly, concentrate on the pandemic. Sadly though the problems that created these elective appointments and procedures still exists. None of us know when things will get moving again. It’s hard for the medics and it’s hard for us being in a void. 

Those of you that read my stuff regularly will know that I had to have the line removed from my chest due to a blood clot. Despite 2 months of daily injections, I still have swelling around the area. I need to take these stinging injections for 3 months and then review. 

I don’t know if it’s the damage caused by the various lines or just to do with the heart but I now have lots of symptoms that indicate all is not well. Your SATS (Oxygen in the blood) should always be 96 or above. Mine goes down to 90 when I try to climb the stairs. I also get lots of swelling in my legs. All this supports the respiratory doctor’s hypothesis that I have mild pulmonary hypotension. 

I’ve managed a week of retaking the chemo drug at a lower dose. I’m pleased it’s worked so far. I feel exhausted all the time and could fall asleep at the drop of a hat. I also feel more nauseous and have pains in my stomach. 

Weirdly I’m also struggling with reflux.  I have to sleep propped up at night to prevent stomach acids ending up in the back of my throat or mouth. 

My mouth is incredibly dry and sometimes I feel like the food is getting stuck as it goes down. I have to chew and chew and chew because of not having enough saliva to break it down. 

My eyes are also very dry despite all the gels, ointments and drops. By the end of the day when all I want to do is flop in bed and watch crap TV my eyes can become really blurry. They burn like when you are coming down with a cold and feel scratchy like I remember the feeling from when I got conjunctivitis as a kid. 

The other weird thing about my vision is that I seem to be seeing wavy lines whereas I know in reality they are straight. The keyboard being a good example. I presume this is a side effect of one of the tablets. Does anyone else have this symptom? 

On a good note, for the first time in a couple of years, I’m not having to run to the loo so frequently. It was anything between 5-20 times a day. Now it’s up to 4 max. So much better. 

My PEG site is quite bloody most mornings and hurts when I first get up. I have to clean it several times a day and change my PJs and sheets more regularly than I would like to. 

My muscles and joints are awful just now. I often sit staring out of the window as I try to breathe over the pains n my hips and shoulders. My ankles and knees are very stiff and tight too. 

My skin is driving me to distraction. I’m itchy all the time. I can often be seen scratching my scalp or rubbing my back against the back of the sofa. I’ve never had dandruff but have it all over my body now as well as in my scalp. Can any one give me a tip for moisturising you’re scalp?

Final change that I’ve noticed is that my nails are awful and full of ridges both vertically and horizontally. They are also very brittle 

I write all these things down to encourage others in their journey’s. Also to demystify what goes on for patients with serious health conditions. I also attach it to the scorpion story. Many of us get stung by life. For those with medical challenges we all have procedures that we’d rather not have done. For example cameras put where the sun don’t shine or bone marrow biopsies. It’s down to us how we react to all of that. Will we let the stings take control or will we keep our temperament which is to give and receive love. 

I want to live in a world with more love and less stings. If the stings don’t lessen up, I will need to increase the flow of love and laughter. I know there is an unending supply. We just need to keep topping our supplies up and sharing it around. Make sure you hand some love away. It might not mean much to you but it could mean the world to the person who receives it. 

Wishing you all love and light and safe virtual hugs.