Saturday, June 6, 2020

Lockdown, Day 77

Another grey and damp day down here in the South East corner. Plus another night of broken sleep so I'm feeling even more washed out that usual...

My mood has not been helped by seeing the latest definitions for the disease that is making my life such a hell. It is officially called Chronic Kidney Disease, but on the table I have seen this morning the stage I am currently at is now seen as the Disease WILL progress. Plus it is now classed as End Stage Kidney Disease. This has hit me hard as I was not aware that my future was so defined already. I guess in the back of my mind I was hoping that one day I would wake up with more energy and a pair of kidneys that are behaving themselves and working in the way they were designed to...But that is never going to happen. I have to get my head round the idea that my immediate future is full of spending 3 days a week at William Harvey in order to stay alive. That is a decidedly depressing thought and not one I can think my way out of, whatever my family think or feel. If I could tell myself that my kidneys now work I really would. This constantly feeling run down and out of energy is horrible and there are very few people I would wish it upon. 

The hardest thing about this is that I look absolutely fine whilst feeling dead on my feet...so on my really bad days I feel guilty that I can't do things - but if I try the following day (or more) I will be able to do even less; so I really do need to keep a close eye on how many spoons I have available each day and admit to myself that when I run out, that is it. I am not able to do/produce more.

I am also keeping a close eye on all the research into Mitochondrial DNA links to kidney disease. Which is one reason why Mikey's eating habits really worry me. His intake of salt is really not healthy and the lack of vegetables is crazy. I wish I could convince him; but it is really a matter of smashing my head against an immovable object. All that happens is that I end up with in hell of a stress headache.

This photo was taken on the "Wash Your Hands Round Britain Cruise" It is one of the few photos of me/the 2 or us, that I actually like. We really must get some more up to date photos done at some point including Mikey!!

Friday, June 5, 2020

Lockdown, Day 76

Today has not started as I expected and the afternoon is certainly not what I thought. This morning was meant to be an appointment with my Nephrologist at 11, he called before 10 as I was about to wash my hair! Quick change of priorities and I worked through my list and he is sending a stronger letter to my GP to try to get my problems getting repeat prescriptions sorted! I do like him and know I can trust him.

He has agreed that I can go and see my Mum today - but she has just called and told us it is pouring with rain in Walderslade and the wind has really picked up. So I'm still stuck here in Ashford and it is now raining here as well. I've provided lunch to everyone here but I can't be bothered to eat anything. I guess I'll just make dinner this afternoon...

The weather has really killed my good mood. Mikey has retired to his room and his x box, Andy is moaning at his laptop and I can't get away. Diamond Painting it still a huge no as my arm/wrist are still agony and I don't feel like curling up with a book. Plus I'm out of chocolate so my mood will probably just continue getting darker and worse.

I guess this evening I need quiet and candles to try to improve my state of mind! I'm watching Garden Rescue at the moment and Charlie Dimmock has just made the point that it is good not to see all your loved ones all the time...my immediate reaction is that I know exactly what she means.

I took this years ago when I was doing a photography course...in the 4 weeks we only took 3 photos so it was actually a total waste of time! I really feel the need to get out with a camera now, but NOT Ashford.

Thursday, June 4, 2020

Lockdown, Day 75

Another night where sleep was conspicuous by it's refusal to happen!! I woke up when Andy's alarm went off - he carried on sleeping like the proverbial baby until I slapped him and he rolled over and turned it off!

My Day commenced with my second session of counselling, most of todays session was filled with lots of memories which have re surfaced or re-emerged following last week. I was amazed at what I remembered and how much detail surfaced as I talked about them, but I still can't recall Dad's voice at all and that is horribly painful. What was extra good is that my teat scores have improved in comparison to the week before. It is all going in the right direction so I am a happy Heather!! That hasn't happened too much recently so I'm making the most of it for now!!

I've had to stop my diamond painting for the time being...I've done something to the thumb on my right hand which results in trying to grip the pen being extremely painful. It is annoying as I can let go, relax and loose myself while I'm doing them, but the pain does make them decidedly less enjoyable... I have a larger version of 'Girl with a Pearl Earring' and also a version of 'Mona Lisa' If I can get these done I'll have to look for more old masters to add to these, the Monet and the Van Gogh I've already completed!! My show is going to get more classical it seems!

My other task today has been to complete my list of things for my Nephrology appointment tomorrow. Because of Covid it is now a phone appointment, but my questions are varied and currently fill an A4 piece of paper. I'm also hoping for his agreement that I can visit my Mum tomorrow afternoon. SHe has also been shielding so it should be safe. Plus Tonbridge and |Malling have a much lower infection rate then Ashford so there is a very low chance of catching it.

This is a 5 year old Mikey collecting pebbles...a great idea until he decided his pockets were too heavy so passed them all on the Mum to carry on her handbag...I'm still not sure that this was exactly fair!!!

Wednesday, June 3, 2020

Lockdown, Day 74

Another odd sort of day to be honest. I woke up to streaming eyes and nose thanks to the pollen; I feel that I need pollution back as it did mask the pollen which has made my life total hell for weeks more than usual this year.

Mikey had his first session with Becky (from Early Help) this afternoon, at 12.45 he announced that he was getting dressed...when he staggered down at 12.58 he was still firmly in his sleep shorts... I was waiting for his usual excuse that why didn't I realise he is just being a boy, but thankfully he kept quiet! Getting him to work with Becky from a distance was quite a task, by the time we finished after 30 minutes I was shattered, he was in an odd mood to say the least and Becky was heading off to a zoom meeting - hopefully they helped her to recover!

I then decided I needed lunch and once I'd eaten that I got a call from the FLO at school to see how Mikey is doing. We had a nice chat and it is really looking as though he is not going tro be back at school until September. Hopefully his year 6 teacher will be ready for getting him re-accustomed to school life again. Knowing my son this has totally left his memory now, he really does have the attention span of a gold fish!

Tomorrow is my next counselling session. I am slightly apprehensive, but can't really explain why...all I can say is it is a feeling...But I am learning to listen to myself and to cope with whatever happens. Typing this has reminded me I need to go and fill in the questionnaires ready for tomorrow!




As we are coming up to a certain anniversary, this was Mikey around the time he was born a whole 10 years ago!! I'm finding hit hard to believe I've managed to keep him alive for a whole decade and I'm still of teh opinion that I should get the gifts rather than him; but unsuprisedly he does not agree!!

Tuesday, June 2, 2020

Lockdown, Day 73

The whole world appears to be going mad - and not over Covid 19 for once, but over the death of a man called George Floyd. Any death is one death to many, but the Americans do seem to be reacting and using this death as an excuse. The riots in various US cities are causing Millions of Dollars in damage (physical and mental) whilst the mobs, which seem to have a high number of white member scream for the blood of a policeman who probably felt he was working within the orders he has been given.

Personally I feel they should be yelling at the Orange Idiot they elected 4 years ago. I vaguely remember his administration having a few black faces at the start, but recently it is decidedly WASP and black faces are totally out of sight. He has also threatened to send the army in to deal with the rioters...I am unable to remember any other US President using the military to quash a public uprising in the past. Is it wrong for me to hope that the people of the United States may remember all of this when the got to vote in November and remember just how he mishandled a global pandemic and their own misgivings of the treatment of a man in police custody.

I thing I am now sure about is why he was even being arrested - the wonderful media appear to have forgotten that particular detail or judged it to be completely unimportant.

I am also finding it hard to accept the 'Black Lives Matter'  Slogan, in my mind surely all lives matter? I accept that over many years white skin has lorded itself as being more valuable than Black, but I am also aware that positive discrimination does not work. All that happens is that the part of the communitity that people are attempting to discriminate in favour of just becomes hated, Disliked and actually discriminated against even more. I would have though that is is in humanities interest to push for Human Lives Matter and include all people equally? Having said that I have probably upset vegitarians and vegans, but I can't worry about any more species right now. I read a Meme recently that asked everyone on the planet to smoke weed at once to bring a few hours of peace to the planet; After the year we have had so far, a few hours of peace sounds wonderful. Having just thought again, maybe All Lives Matter, covering all sentinent beings...
                                     Back to Dungeness, I really need to relax and chill out!!

Monday, June 1, 2020

Lockdown, Day 72

Monday again, I'm seriously considering putting the days in the titles as most of the time I have no clue what day, date or month it is. The year is easy as 2020 I feel, is going to be never ending and is officially the year from Hell.

As well as the infernal virus the hay fever season is feeling worse than it has been for years. The last time I suffered this much was back in 1989 when I was taking my A Levels. I do remember ending up with Bronchitis which was horrific when I went to the open day Royal Insurance held; but I managed to get invited back for a formal interview and finally left after 14 years and a merge with Sun Alliance and various roles which, I can honestly say, I enjoyed almost all the time!! Unfortunately I doubt jobs like those I undertook actually exist anymore.

One side effect from my counselling last week, is that I've been getting flashbacks to episodes in my life I would prefer to forget. My one big hope is that I will remember Dad's voice as, for the last 4 years, trying to recall it has just resulted in a back and empty hole. That emptiness does not help to reduce the grief I feel and I had hoped that by now I would be able to think of him without it resulting in me dissolving into tears. I am very aware that grief hits us all in different ways and for differing lengths of time, but I don't have any idea how to help myself with this. At least I will have something new to talk to Andrea about on Thursday.


This is Dungeness on the coast, for some reason I seem able to let go of things here...hopefully we will be heading back once we are able to get out and about more...I need some clean, fresh sea air I think.

Sunday, May 31, 2020

Lockdown, Day 70 & 71

Yesterday was yet another tough day for me... It started off well as I found I have managed to lose 1.5kg doing the 16:8 system... It seems to work well for me; at least once I had a stern chat with myself to convince my head I wasn't hungry and did not need a late night snack!

From that positive my day just seemed to spiral downwards. I'm not sure what, if anything, caused it but I just got worse and worse as the day went on. I could blame to pollen as I've been suffering explosive sneezing and my head and nose are well and truly blocked. The joys of CKD mean that the strongest painkillers I can take are paracetamol - these do precisely nothing to relieve any pain for anything like to 4 hours you have to have between each dose. If I could take them every 30 minutes it would be better to be perfectly honest.

Both of these photos make me smile, but for totally different reasons! I think Mikey was on the verge of an ice cream headache, but that has never slowed down his love or enjoyment of the cold stuff! The window is in a chapel in Dover castle and I just happened to be there as the sun streamed through it, I don't even remember the colours as I took it, I just remember feeling really warm and happy so I just snapped!! And that was the result...