Posted in No category yet

Covid

OK… So I’ve not been around much due to me having the virus for ten weeks, and I’ve only just got a big tablet to see what I’m typing or reading. As my phone and reading glasses are becoming obsolete.
As my health history goes this has been the worst, most frightening illness I’ve ever had.
Week 4 to 7, 8, especially bad. Panic attacks, fighting, gasping for breath at times, lungs screaming in pain, palpatations, fear, mentally exhausting, all this even just sat down. My mental health has taken a real dive. I mean, this got as bad as, I wrote my pin numbers and passwords in a book one night when I was quite delirious and exhausted. For the worst 3 to 4 weeks I wouldn’t sleep through the night. I was scared to. It was worse then. The symptoms seemed to start getting worse early evening. The breathing and the chest pain. I would be still awake when daylight came, if everything was happening altogether. I would sleep a little in the afternoon before it all became too painful again.
This started suddenly, as a cold. Not a cough. Sneezing, usual stuff for 4 days. Then I woke up on the Saturday, I was coughing, hot, exhausted and heart banging with the pain in my chest. Every few minutes taking deep breaths. Like a rising panic attack.
My taste and smell had gone, still hasn’t 100% come back.
It wasn’t until about week 7 that an ambulance actually came after ringing the 111 and Covid 119 number… Just for advice.
They wanted me to go in. I was Tachycardic. They left it another half hour as I really didn’t want to go to. They redid my heart trace and blood pressure.
I had resigned myself that if I had to go in, I would have to.
The 2 lovely men that came rang my doctor. He diagnosed me with Long-Covid. Which the ambulance men had already mentioned and explained. We all had masks on in my home. They placed the mobile on speaker in front of me to speak to my doctor, I wasn’t allowed to touch it.
I also had my oxygen, and pulse checked. My heart was just constantly racing by this point.
They wanted to make sure that being left alone my heart and lungs would be strong enough to cope. That is why they rang myself doctor.
Knowing that eventually my blood pressure went down, and my heart trace went back to normal was a comfort. I now relied on them. Basically this was out of my hands so to speak.
They told me if I wanted an ambulance in the future to ring 999 before it all got too much to physically cope with again.
I never thought I would ever feel better again.. I’m around about 80% now. Some days are worse than others. Today being particularly bad again.
My appetite is better but still not 100%. I’ve lost alot weight, as I was mainly eating chicken soup and super noodles.
These sometimes had to be forced down, mainly just once a day, sometimes early hours of the morning, to make something change. When I realised I hadn’t eaten anything. To make me better from what I was experiencing. I knew I needed sustenance to fight this grip it had on me.
This is NOT just flu or a cold.
I took vitamins, medics suggested salt in my soup and sachets of mineral replacement. To sit on the step outside, wrapped up, to get vitamin D.
My eyesight has diminished.
My voice remains deep and raspy.
I still have pain, I still get out of breath sometimes.
I had 2 appointments for eye tests that I had to ring and cancel.
These were unexpected tests for Field Glaucoma and to the Optos clinic.
This post isn’t for sympathy or any ‘you ok hun’ replies.
It’s so anyone out there thinking that you will be OK because you are relatively young, fit and healthy, with no underlying heath issues, won’t get this, you are wrong.
I, 100% thought that. I’m a tough cookie, not because I’m strong, but because I’ve had no other choice to be that at times. I do however have alot of will power, but… Nothing was working for me like that. However hard I tried. I couldn’t shake it off. I had to rely on my heart and lungs to be strong enough.
Haven’t told anyone really how actually physically and mentally disturbing this all was/is.
So if you can’t be bothered social distancing, or don’t believe in it, say… ‘oh well I don’t feel ill so I won’t have it’ or just plain lazy.
For the people who you love. Do it for them, if not for yourself.
Do it for the people who want to end it all because they see no end to this, do it for the people who have already lost loved ones, the people who have died because they couldn’t get a doctors/hospital appointment or treatment for existing illnesses. The people still out there working, my son being one of them.
I was healthy before this… But… Unknowingly, I could have spread it to someone through that window of infection, before my symptoms showed up. Some people don’t have symptoms at all.
Abiding by the rules of wearing a mask, hand washing, 2 meter distance, and not just willy nilly visiting people because you are thinking… Oh I won’t get it… They won’t get it… Everyone you visit, everyone you have in your home, everyone you sit next to when you shouldn’t, is like having whoever they see too… Like having hundreds of people together at the same time.
What if your loved one gets ill? Or worse? How will YOU feel? Think about it? Want that on your conscience? Or don’t you actually have one?
I don’t know who gave this to me, maybe a stranger I passed or someone I know.
We aren’t in a much better position from March really … Yes we have a vaccine of sorts but some of us won’t get that for months, maybe a year for the younger people. And you can blame anything or anyone else you want… But if you are carrying on as ‘normal’… YOU are the problem… YOU are spreading it. YOU are stopping life getting back to at least some sort of normality. YOU are making people ill and parts of the country having to have a new 4th Tier.
Yes I’m angry… I’m a different person from before becoming ill. I first went to the supermarket a few weeks ago after not being inside one for so long. It shocked me how people don’t care, don’t stay away from you anymore like they did before I went into isolation.
Did I catch it due to me just having bad luck getting the virus or someone who is just living normally, because they only care about themselves? The doctor rang me today. We had a chat about how I’m doing. He told me that some people who have recovered from Coronavirus are sometimes left with some life long and life changing conditions they never had before. Or it exacerbates and causes more damage to the illnesses or conditions you already have. So it’s not always of ‘I’ve had Covid now I’m well again’ some people are still having to live with problems afterwards.
Just have a think about that…
The main thing I’m angry about is that although what I’m left with should clear altogether in the coming months as I get fitter and healthier, the vision problems possibly won’t. So the poor eyeballs have suffered some damage at some point during the illness.
And that’s not fair as they were hanging on in there.
I feel sorry for the people who already have underlying health problems. They probably won’t be so lucky.
I now know how healthy people without underlying issues don’t make it.
I feel I’ve been very lucky.
But really, is it worth the risk? Worth being part of the problem? Worth risking family and friends because you are too thick and uncaring to understand it? Worth prolonging this pandemic because YOU are potentially spreading the virus for everyone? Giving people long lasting health conditions they never had before and making the existing ones worse? Because that’s what you’re doing, whether you like it or not.
This pandemic has shown extraordinary acts kindness, people are now keeping in touch, more than ever just by all the technology we have, we can see and talk to people with the click of a button. Do that instead of meeting up. There are NO excuses. We are all in the same boat. We ALL find it hard. But I’ve found, when someone is fundamentally self centered and selfish, they won’t change or adapt for anyone. The people who read this and still carry on regardless or don’t believe are exactly that.
If I’m prepared to do this, stuck alone without another human at home to sit next to, then so can you.
If you actually truly love someone, the very, most loving thing you can do right now to show that love, is by staying away.
Love isn’t just hoping or presuming you or them won’t get ill, or die, that’s the difference.
Posted in Hospital Appointments, How I'm Adapting

Change of diagnosis?

Green eye, with question mark on pupil level on a white background

OK. So, I’ve known this fact since September (2019) but couldn’t bring myself to write or speak about it until now.

The 3 tests I’ve had were a result of my diminishing peripheral vision and escalating light sensitivity.
They need to see what’s actually going on in there.
The spectrum of Macular Dystrophies isn’t supposed to take your peripheral vision away.
It can make you photophobic though. (Extreme light sensitivity)
The consultant was concerned by this. I’ve got the same pattern as everyone else with Macular dystrophy that he can see, but there maybe something else happening.
It seems to be my right eye that is the worry. That’s where the black blob is in the dark. The blank space at the side of me in the daylight. The reason I think someone is stood near to me when they aren’t and why I have trouble nearly tripping over the dog on long journeys. My eyes give up after a while having to concentrate. Isn’t enjoyable anymore. Or relaxing. Why I have to swirl my head like an owl when I’m crossing a road. The reason why, although I can’t see well in the dark, my room is always dark. I can’t have lights on to see, because they hurt me, cause glare and I am literally blinded by the light. A rock and a hard place.
I haven’t had my results yet. Although you always get a follow up letter after an appointment and I do know that there is a infernotemporal defect in my eye/eyes. It had that on the letter. I did a post at the time. This is your peripheral vision. It’s a biggy. I’m not ashamed to say that I’m very scared and of the opinion ‘ignorance is bliss’ at the moment.

Please click on the picture below to view my past post about this.

I asked him if he thought I would go blind. He said that this is why he wanted to give me some tests. The big ones to find out. I went to 3 different hospitals for them.
One of the appointments, me and my sister made into a lovely day out after we had been. As it was in a town far-ish away that we hadn’t been to since we were children.
I\’m undecided whether to go on my own for the results. When I had the news last year, afterwards I left the hospital, it hit me. I took myself away and just cried. Not full on sobs. Just tears rolling down my cheeks. Angry, frustrated and frightened. Felt very alone and at odds with everyone else around. I had to get the bus back home, 15 miles away. which actually helped, as I had to hold it together. Just staring out of the window trying to take all the scenery in. Thinking of something else, rather than that nightmare.
On the other hand, I want someone there. To actually listen to the doc himself as I will probably just not remember it if it’s bad news and be there for me because I won’t be able to cope with that. If it’s good news then, I will have someone to celebrate with ☺
The next appointment hasn’t arrived yet. I did have a phonecall 18th December last year. Wasn’t prepared, I didn’t really want to know back then. So said I would wait for a letter. What with Covid now, they will be reducing the backlog, and seeing to emergencies. So will just wait till a phonecall or letter to arrive.
Posted in Useful Information

Blue light filter

Blue light filter.
This is the one I use. Been using it for years to protect my eyes from the harsh blue light. Makes my eyes feel more comfortable because you can dim the screen to suit you.
It has different settings. Just pick one that you prefer. Has different colour filters, so you can find the one you like the most. You can also adapt the intensity.
Comes with a handy flashlight too.
A tip though… I do have to switch it off when taking photos with my phone as they come out darker with the filter on.
But there is a helpful settings bar that isn’t intrusive, so it’s easy to turn on and off. As with the flashlight.
Free from Google play.