feeling ill

Ive been feeling unwell my stomach was playing me up since Friday last week 11th August while I was staying with my cousin Vera in Woodbridge Suffolk, so Saturday I decided to come home, I couldn't put my finger on it at the time what was exactly wrong. 

Sunday I thought the fatigue was from travelling. 

Monday I felt rough in myself. 

Tuesday I was ok up to around mid-day, then I came over real bad and had to be sick 🤮 I've lost count how many times I was sick 🤮 I had a terrible headache my stomach and all my body was hurting so much, and my skin felt like it's on fire, my hands and feet were painful and burning, I slept most of yesterday afternoon but as soon as I woke I had to be sick 🤮 

 the same today Wednesday, I've just been sick again. I've taken pain killers and rubbed pain killer gel in my feet, shin bones, knees and hands, my feet and hands are so numb with pain. I've been trying to keep myself cool with my fan to ease the burning pains. Today still Wednesday, I've really lost count of how many times I was sick 🤮 today.

The last food I had was this morning a banana for breakfast which I brought up. I just can't eat or drink as it all comes up. I'm just bringing bile up now. I'm drinking water but hoping to keep it down. I've been falling asleep and woken because of pains in my stomach and have to go to the bathroom to be sick. 

I think its Fabry Disease, and Hiatus Hernia giving me hell.

I hope I feel better tomorrow. 

Sandra

memory Loss

My memory is so bad, I'm having difficulty remembering anything. I think of something and it's gone like flick of the fingers, in a flash! My mind goes completely blank. I can't remember things I've said or done recently, this is getting worse each day and it is worrying me.  

I've been told by people it's age, maybe a bit but I don't think so, I believe it to be Chiari Malformation which I've had experiences of memory loss and not recognising people who I know very well or I dont know where I am. 

Sandra

symptoms

LSDU

Fabry Disease

I've been having horrific pains, burning pains, needle pains throughout my body, feels like in the flesh, bones, hands and feet, knees, numbness in fingers and toes, tingling, my vision gets cloudy and find it hard to focus-Ive got new lenses 2 weeks ago.

Co-codamol 500 and Voltarol cream pain killers don't help much. I hurt so bad whether its hot or cold. I can't bare to have clothes or bed covers on me when I get these pains. I get stiffness, cramps, trouble sleeping, memory problems, light hurts my eyes, difficulty concentrating I seem to forget what I'm talking about. I've got irritable-bowel and digestive problems, I have a lot of bloating and stomach pains. I get a lot of pain in veins in my feet and hands, and feels like crawling in veins. I get so tired and fatigued swelled ankles and bloating mid-drift area makes it difficult to breath too.

I'm finding it hard to cope with these pains as they're getting real bad. The pains make me cry even after using pain killers as they dont help much, I just don't know what to do with myself at times. I think I need help, some kind of help.

 At this present time I've got chest infection so I did cancel my appointment for 7th September at 12 noon. 

Can you send me another appointment please. I'm free from other appointments September up to 1st October I go on holiday return 12th October. I'm free to 19th October got appointment at St.Barts Hospital, London for heart check. After 19th October I'm free. I must tell you I'm prone to chest infections so hopefully I'll be there on date of next appointment. 

At this present time I've got a chest infection and I'm on antibiotics and steroids. Antibiotics Doxycycline 100mg 2x1 daily 7 days, and steroids Prednisolone 5mg 6x6 days. Plus all other regular meds. I finish the antibiotics and steroids Saturday 9th September. 

Fabry Disease. this is one of my worst experiences of Fabry Disease.

Freezing cold and body all over shaking violently so bad all over 7th February, all night' felt so ill still shaking violently, I couldn't walk when I wanted to go to bathroom, it was like walking like a spastic..I dont like using that word. It started to ease off about 10am today 8th February this afternoon, I'm hot now and trying to cool down, burning pains in legs feet and hands. Its happened a few times over years that I can remember. 

I've had a headache all day, well for a few days really. Its Fabry Disease at its worst. Just took pain killers. I couldn't even think straight before or i would have taken them before, when i feel a bit better ill take my other meds and insulin. I'm staying on my bed all day today resting as I'm so unsteady. I'm using my walking frame as I'm too unsteady with walking stick and almost fell, all my muscles were shot to pieces from violent shaking. This is the worst I've been for a few years, last time it happened I was living at my house. I'm so glad I'm living in independent Living flat. I phoned my next door neighbour Jack he came in to see how he could help, this was about 11am today. I must say he was so skocked to see how i was at tge time. He offered to make me breakfast i couldnt eat anything, but he made me a cup of tea which was really nice and brought me water, all I wanted was fluids. Jack had to help me sit up and hold me up so I could drink my tea, Jack even had to help hold my cup so I could drink. He was worried about me. 

I didnt even feel like watching tv or doing anything like reading or crossword puzzle really my favourite pass times. I'm just going to rest for a few days until I feel much better. 

This one of the most terrible experiences I've had of Fabry Disease. That was an experience of COLD intolerance. I've yet to suffer the HOT intolerance when warmer weather starts. Out of both experiences I hate the freezing ice COLD worse it affects my whole body bones and muscles, the severity is unbelievable only to the Drs who know about the condition or those who have suffered with Fabry Disease. 

My fingers were so ridged I couldn't hold anything, I suppose like severe arthritis, like twisted cramped fingers. What scared me the most was my muscles not supporting me because the severe violent shaking had shot my muscles to pieces. when I tried to sit up and when I eventually got up to go to bathroom which took forever which was worrying as ya could imagine. That's happened before, but this last time was something else, an experience I'll never want to experience again. 

I've  prayed 🙏 to God so much this week

Sandra 

Fabry Disease

Fabry disease can affect various organs and causes many symptoms that also can happen with other conditions. This rare genetic disease also may trigger different symptoms and problems in different people. And the symptoms can range from barely noticeable to very serious.

Common signs of Fabry disease may include:

• Pain, numbness, burning, or tingling in your hands and feet
• Small, dark red spots on your skin, often between your bellybutton and knees
• Fevers
• Sweating less than normal
• Swelling in your legs and feet got Fabry Disease:

My legs and knees are painful and burning also sore and itching real bad, in the flesh only. I get it in my hands and feet too, but not in hands and feet today though. I have to try and keep my affected areas cool when weather is hot or vice versa when its cold weather.

I get so tired and fatigued and many other symptoms. Bloody Fabry! 

OMG it really bothers me, it's so unbearable at times. 

Plus all my viamin levels are dangerously low. Vitamin D3, vitamin B12 and iron. 

What are the symptoms of Fabry disease?

• Numbness, tingling, burning or pain in the hands or feet.
• Extreme pain during physical activity.
• Heat or cold intolerance.
• Abnormal opacity of the eye (cornea), which does not change someone's vision.
• Dizziness.
• Flu-like symptoms, including fatigue, fever and body aches. 
• I have got Fabry Disease and suffer with many of the symptoms. I've had tests on my heart,  kidneys and brain. Luckily Fabry hasn't affected my organs. Thank you God🙏

Sandra

Feel Like I'm Living In A Bubble

Hello, and thnx to who reads my blog. 

Again I'm on my way to being ill. It feels like a chest infection coming again, I'm not taking any meds until I have too, I've got my rescue pack already. 

My immune system must be shot to pieces for me to be ill all the time. I'll be glad when I get to talk to a consultant for Fabry Disease 9/06/22 at The Royal Free Hospital, its a telephone consultation. I've already spoken to a Dr from The Royal Free Hospital a few weeks back, I told him what is happening to me and he understood my symptoms, the horrific pains in my body, when the weather changes i suffer heat and cold intolerance,  from hot to cold or cold to hot, like we had last week and week before and and I was laid up in bed and what with the continuing chest infections and how they are affecting me. I'm so bloody fed up with being ill... fucking illnesses! 

I know I've mentioned all this in previous posts, but I need to write this all down so I can reflect on later. 

I do put my continuous chest infections down to Fabry Disease. 

Its been about one week ago since I had my last antibiotic. I seem to get a few day freedom before it starts all over again. 

I can't make plans incase I'm ill. 

I've put off a couple of holidays because I don't know if I'm going to be ill or not...Grr! Its a bloody nightmare. I feel like I'm living in a bubble.

My friend wants me to go to the Isle Of Wight with her, but I'm worried because the hospital is on the mainland Southampton,  plus i think its an hour on the ferry, I'm worried because I could be in serious trouble and not get the help I need, I think I'll have to tell her no I'm not going even though I would love to go with her. It sickens me. My friend said I always seem to be negative, I'm not really, I'm just being cautious and looking at the pros and cons of the situation. I know my own body.

I think I should stay close to home, maybe Southend On Sea, maybe! At least there's a hospital not too far away and not too far to get home either.

People don't understand what I go through and how I'm affected, I have to look at the pros and cons of everything where my health is concerned.

Sandra 

Need To Gain Strength

Ok I'm poxed off because I can't sleep so I'm going to ramble on. 

Ive got 2 negative covid results 10/03/22  and 11/03/22. I phoned my chemist to make sure its safe for me to leave my flat and they said yes, so today I was able to go out and mingle with other people which was really nice after being coupt up in my flat for 14 days on my own which I didn't mind really because I like my own company. 

Today I walked around all the corridors upstairs here to gain some strength so I can go outside for proper walks, tomorrow I'll add the downstairs corridors to my walking exercises, I get very fatigued, might be the after effects of covid or Fabry Disease or both. I won't try the stairs yet though because i know I'm not ready for them yet, I've got to conquer on the level first , I don't want to do to much. 

In the morning Saturday I'm going with my friend Shel to my church table top (jumble sale) I'm only going from door to door and probably sit down most of the time talking to friends, I'm looking forward to that, if I don't get any sleep I won't be going anywhere. Nite Nite 😴 

Sandra

health problems...

Last night I was restless, I didn't get to sleep to roughly 3:30am...ish. I got up at 8:15am. 

Today, I've got a bad upset stomach again and feeling nausea so not a happy bunny today. 

I'm having a quite, lazy day I would say. I'm just going sit on my sofa and watch tv. At least yesterday I had a good day very few and far between. 

If its not one illness its another, I expect many people can relate to that! I can't really say what is upsetting my stomach as I've got so many illnesses that could be the problem. I think it could be the gall stone causing my problem. Then again it could be 'Chiari Malformation' which causes diarrhoea or 'Irritable Bowel Syndrome' or 'Fabry Disease' I think really the gall stone. I was told when I had the scan it's a large stone. I suffer with other illnesses too. 

■ Chiari Malformation is a rare condition of       the brain. I was diagnosed 2006

https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010

■  Fabry Disease is another rare condition I        have I've have which is low immune                system. I was diagnosed with FD about 3        years ago. I've had symptoms all my life.        I think I inherited it from my mum, but            not quite sure. 

      My eldest son has got Fabry Disease and        suffers badly. 

https://my.clevelandclinic.org/health/diseases/16235-fabry-disease

       Sandra