I HAVE NOW BEEN ACCUSED OF BEING A HYPOCHONDRIAC!!!!
Yes that is me, or so I have been branded by an idiot recently. I have not even seen this person for over three years yet he thought to brand me with this name to all in my old neighbours! It hurts so much to be called this as we with ph know just how hard it is for us to try to get on with life and to appear as normal as we can. There is so much we go through unseen by many. I thought about all the things I have had to endure to stay alive and wanted to write him a letter to tell him so. Of course I will not do this but if I had done, my letter would probably read something like this, as indeed would many of us suffering with pah. A friend told me maybe I should clonk him on the head with my oxygen machine (I only use it when flying) but I thought I would prefer to mow him down with my trusty mobility scooter. My friends say I actually play DOWN my illness by generally saying I am good or if I am not well I say “ oh up and down you know” rather than feeling sorry for myself. So for this guy to say this about me in an email to many has me livid!
I have been both enraged and hurt in equal measure by being branded a HYPOCHONDRIAC by someone.
I could have fired many things back at this person through all his accusations and his libel but the truth is I won’t lower myself to his level.
Given six weeks to live WITHOUT meds I had a line placed in my chest that led to my heart. This pumped a drug every two minutes to keep me alive. It was a hard regime to cope with and took 30 minutes a day to refill as such care needed to be taken filling the syringe and keeping things so clean and germ free. but the pump helped my heart. HARDLY A HYPOCHONDRIAC.
I was given two to three years to live once the meds helped, this is certainly NOT A HYPOCHONDRIAC.
The time line of my expected death up to date has never changed cos the reality is they tell me I should not still be alive. I have chips inserted into my chest and my pulmonary artery, hardly the thing for a HYPOCHONDRIAC to have. These are looked at daily and charts taken both for research and to monitor me remotely from the hospital. I do this so studies can be done on exactly what happens in the heart and lungs of somebody cursed with this ONE IN A MILLION disease and to help those who come after.
I was the second person in the UK and the 8th in the world to have my lungs “ microwaved” or Denervation as the correct name is called . Don’t ask how painful it was cos I can’t describe, no anaesthetic allowed for us due to our hearts and lungs. not something a HYPOCHONDRIAC would willingly do and not something specialists from Israel would fly over to carry out as they did if I was healthy. However I have shown much strength and determination and take many medicines with horrific side effects in order to stay alive. I take oxygen often as and when needed as pressure in lungs changes constantly. and use a mobility scooter from time to time. To be accused of being a HYPOCHONDRIAC to all my ex neighbours is heartbreaking. What will they think of me, especially any new residents? My sleep is pretty bad cos my mind is whirling with the hurt of this accusation. My resting heart rate has risen by 20 beats per minute through all this upset and poor sleeping and this is so not good for somebody already battling with a bad heart and lungs and we are constantly told to avoid stress. I really need to rest easier. Still through all this I will not give him the satisfaction of responding to his libel, it is what he wants but won’t get from me unless and hopefully it can be addressed in court. I can furnish documents to prove all this and am happy for my medical files to be accessed to verify all.
IT HAS BEEN A FUNNY OLD YEAR
Ring out the old, bring in the new. These are words often spoken by many at the beginning of a new year. However this can so easily be the words we are saying now as we begin to come out of lockdown. What an odd time we have lived and are still living in. Let us hope that things improve for us all worldwide and we eventually come to see this pandemic as just something we need a yearly shot for as we now do for flu. We have a long way to go get though and indeed we need the whole world to be in a better place regarding coronavirus before this can happen. I have so far received one jab of Pfizer as has Colin and my daughter who is a bad asthmatic and works front line has received her first one too a couple of weeks ago. We can’t wait for the second dose.
VIDEO AND PIC.
I was invited along with others to do a video to bring awareness, to tell my story and to try to bring hope to the newbies. The T shirt I was to wear is one I have proudly owned for a few years now and bears the names of many ph survivors worldwide. I was more than happy to do this and eventually it will appear on Youtube where hopefully it will bring a little hope and comfort to some. As I was doing this I asked Colin if he could try to recreate the photo that adorned my Facebook page for many years, one 20 years out of date taken by Phil who is a good friend of ours. Never liking my pic taken there are so few of me so it seemed like a good opportunity to do it. I had make up on ( I loath the stuff preferring to be just natural) and my hair is greying but I did find a jumper a similar colour to the one from so long ago. Anyway job done so now my new Facebook pic and the one on this blog is an honest one, this is me now so it will remain for a little time until we decide to change it.
MRI’s
Whilst out walking a few days ago I received a call from one of my specialist doctors. It was just a call to see how I was doing re my ph. As I stated I was having a walk at the time and told him I felt my ph was doing good ( he agreed as he had seen some of my remote monitors) and I put it down to my doing more walking. I told him i was happier walking as it took away some of the pins and needles and numbness in my hands and fingers. Delving deeper into this and asking more questions he became alarmed and said he felt I need an emergency MRI. I laughed and told him that for years I have suffered a bad back and that this was just another episode.. The injections I used to have but missed through Covid helped this such a lot. He said he wanted to talk to a neurologist and would ring me back. My friend and I carried on walking through the woods at the side of the river and enjoying nature when the phone rang again. It was my specialist again who had made his call and they both agreed I needed to get to A & E NOW and arrange one. I laughed and said it would not happen, we were in Covid and I was still waiting for an MRI re my back from eighteen months ago. Long story short I did go and they did do an MRI and sent it through to Sheffield and my specialist. The problem was they had taken the MRI of the wrong part of my back despite me reiterating that I was told my Sheffield hospital required a full spinal one ( they took the lower half) . I was unaware of this and was left in blissful ignorance until just a few days later and was again rung by my specialist to explain what had happened and that I needed to get over to Hallamshire the following day for another MRI and some tests. We rearranged the care of Izzy and off we went. Of course Colin was not allowed in and so he went into the local park to take photographs.
Full blood tests were done and another Covid swab taken and then Robin my specialist appeared with his hammer etc to carry out a little investigation. I hate it when my specialists have to do some things as they are all good looking and some things embarrass me. I jokingly told him that if he were ugly it wouldn’t be bad him taking these tests but he was drop dead gorgeous so I was not happy, He laughed! He told the nurse that came into the room that when all tests were done he wanted to test my brain cos I had said he was gorgeous. . This broke the ice and without further ado all tests completed. MRI done and then the wait for results. It didn’t seem so long to wait and thanks to the wonderful staff I was rarely alone in my room away from other patients due to Covid restrictions. ( my Covid test came back clear ) Robin came and told me that though there was further degeneration of my spine it was ok. He had however spoken once more to the neurologist and I would be receiving and appointment to see him. Gosh it never ends does it but who could knock the care we received from this wonderful hospital.
SOMETHING TO LOOK FORWARD TO
Some great news we received recently and that was that my daughter and her lovely partner Chris are to tie the knot early next year. Invites have gone out and next week I have been invited to go with my daughter to look at wedding dresses! I am so excited as we just love Chris and to think my daughter will be Mrs Williams in the not too distant future pleases us both greatly. They are having a small wedding at a very select venue with a bigger do in the evening if Covid restrictions allow. Izzy is to be her Maid of Honour and our lovely Harry is to be the Page Boy and tasked with carrying the rings down the aisle. Both children are so excited as indeed we all are. Danielle’s dad will rightly give her away, we have always had a good relationship so there are no issues with this but Danielle and Chris want Colin as her step dad ( indeed he does think of her as his daughter as she was only young when we got together and married) want him to play a roll in this lovely day. He is to walk down the aisle by the side of Izzy who said this makes her very happy and it will be to him who Izzy will pass her flowers so she can take her mommy’s. Many arrangements are going on but at last this will happen. It makes me smile on the bleakest of days and I feel sure I will still be alive to see this.
THIS POOR CREATURE
Izzy has a rabbit, well she has two but one in a harlequin one and is so cute. He is very loving and runs up to be petted and likes snuggles. Sadly however he has developed an illness where he eats himself! He has eaten two toes and his tail and lost lots of fur from his tummy. There have been many vets visits and the vet said she has never seen a bad case of whatever it is ever. Blood tests have been taken, poor Copper, still awaiting results but it is not looking good for him. Her parents have told Izzy she may need to return home to her mommy as very poorly. Even I love this rabbit cos he is as cute as a button and as loving as one could ever wish a pet to be. I had thought he was improving, indeed we were all hoping but today I was told by Chris he has started to eat another toe. I do not think this bodes well for him. Since writing this he has eaten part of his leg down to the bone. The vet has bandaged it, upped the antibiotics and the pain killers. He still appears so happy to see people, in particular Izzy. Whilst Izzy does see pets dying as she has had quite a few in her life the reason she will not be told this poor thing has to be put down is that she adores him so much and has seen him endure such a lot she will be heartbroken. She will believe that he has gone back to live with his mommy as he is clearly poorly, I feel the next few days will be the final ones for poor Copper.
Poor Izzy was playing with a yo-yo in her garden the other day. She was throwing it up in the air and her mommy told her not to do this as it was dangerous, She carried on to her detriment as the yo-yo hit her in her mouth splitting her lip badly and also hit her front tooth halving it with the force. It wouldn’t be so bad had it been a first tooth but this is a second one, She was taken to the dentist who said she needs a lot out work on her teeth as they are growing very oddly at weird angles, Sadly she will need work to be carried out for years.
GARDENING
We planted our veg out yesterday only for it to snow three hours later. I do hope,they survive and I had hardened them off but we shall see, typical of our blooming weather. We still have alpines to plant down the banks but will leave them for a while, We have many stakes in for the veg and hope it deters the foxes using our patch as a shortcut as they do, last years they kept breaking my potato plants,
Right, here comes the end! I trust you are all keeping safe and well. Please leave a comment or two and I will, reply.
Warm love
Carole xxx
