My Condition Is Increasing Again After Many Years

[willows]

Some of you may have wondered why I'm not of here much now , yet seem to be able to do my charity work with no problems .

Well its a case of if I didn't do something when I am well enough I would end up in bed 100% of the time instead of the 50-60% and sometimes more I spend there now , my brain has always been active and if |I dont keep this going , however much pain I suffer doing this , I might as well sell all my shoes and just buy more sheets for the bed

I have for years fought my condition with every bit of strength I can find from within me , but I'm now finding that more and more of the little annoying things are escalating into much bigger problems .

Let me explain what I mean .

INCREASED ANGINA ATTACKS.

My angina has increased and I suffer an attack at least once or twice a week now, at 8.30 on Saturday evening having been there since 10.30 am in front of about 40 children , 20 parents , 15 adults who work at the museum and my family ...............I yawned very loud indeed , then I yawned again , and again , and again , this for me is a warning that I am not getting enough oxygen and I'm about to have angina , by the time my husband got to the car and back with my GTN .............I was already grey, sweating , chest pain like a bulldozer , tears streaming down my face , feeling sick , dizzy and generally feeling ' not to good ' GTN , strong coffee and a cold cloth and in about 20 minutes I'm looking better , but so tired I dont quite know what to do with myself .

Being 60-70 miles from home and from my wonderful bed ..............ahhhhh , bed all I wanted to do was go home and lay down.

Unfortunately the person who owned the museum expected me to carry on working until 10.00 pm even though I was looking like death and was unable to stand on my own , her reason for this , she like most people had no understanding of POTS at all .

I had informed her fully of my condition , its pit falls , ups and downs and that if I did to much what would happen , but as she had never heard of .......never seen........... or talked to anyone who had POTS before, so she magically swept aside all I had told her as if my condition was none existent and for her it was a case of 'carry on regardless ' .

My son decided differently, and with not uncertain terms told this lady that I was going home NOW , collected by vanity case , cloak and other small items and sat me in the car and off we went .

INCREASED JOINT MOBILITY .

My joints are now causeing me more problems , my hip joints are constantly being pulled back into alignment as one of them will move so much that I will get the most horrendous pain down the hip , leg and into the foot .

On Sunday having just eaten my lunch I went to pass a plate to my husband , as I lent forward my left elbow slipped off the side of the arm chair , somehow in doing this it dislocated and I was suddenly in the middle of excruciating pain and found myself screaming at my husband .............(who didn't know what was wrong at this time) unable to move at all , tears steaming down my face again .

Running back into the room I managed to tell him between screams that my left elbow was dislocated , he was able to pull it out then with a mighty 'snap' he put it back in ( it crunched as he did it and OMG the pain ) it is a good job that my husband has trained in medicine of this kind ( mountain rescue medicine etc ) and can do these things for me or I would be in big trouble most of the time .

INCREASED INABILITY TO EAT & CHOKING ON FOODS .

I'm finding that I can no longer eat three meals a day , two meals a day or sometimes even one meal a day . My appetite has dropped to the extent that I just cannot eat more than an average child's plate full , and I mean a child of about 2 or 3 years old ! Nine times out of ten I then cannot eat more than 10-12 small mouthfuls of this , when I do I will chock once or twice with eat meal as my throat goes into a contraction ending up with my husband having to lean me forward to get the food back up again. mmmmmmmmmmmmmm, nice or what !

INCREASED INABILITY TO SLEEP NIGHT TIMES.

Yep , this is why I'm here at 3.50 am instead of fast asleep in bed , I haven't been in bed all night for about 2 -3 months now and on average sleep about 2 hours at night time . If its not the hips, legs or chest pain then I'm sweating or scratching myself silly with the feeling of ants running all over my body , which when I stand just disappear .

INCREASED INABILITY TO SPEAK CLEARLY.

This is very annoying as well as distressing at times.

I'm find it hard especially first thing in the morning to be able to speak , it's not just the yes or no , coffee or TV on , I'm talking about holding a conversation in sentences that make sense . The phone went a couple of days ago and I was trying to tell the person at the other end details of mine , but I kept being unable to say the words and stumbling over them , not being able to pronounce things or taking a word and having to brake it up into two or three parts like ..........instead of saying Plymouth I said Ply - mo - thski and so had to keep repeating it or forgetting what I'd just said and have to ask again and again what did you just ask me .

What with the new hospice fundraising events about to be launched and my Hogwarts Castle to be sorted ( I'm designing it at this time ) and built very soon , I will be doing more public speaking , more standing , more meals out for fundraising and generally more of everything

So you can understand why I'm getting worried by all this . I haven't changed my drugs , the way I take them , food items , house stuff or anything at all in my life.

So I have to put it down to that after all these years of keeping ' POTS firmly in the cupboard ' its now coming out and on roller skates heading my way with an evil look on its face .

I have never told any of you this before but many years ago when I was about 16 years old I was in a wheelchair for about a year , having been unable to stand on my own because of my back, hips , legs the dizziness and passing out .

I had been in bed for 6 months before this very unwell ,but had made the decision that if I didn't get out of bed I would be there for the rest of my life , having done that I then set about getting out of the wheelchair , it took me 9 months of falls , pain, tears and just hard work , but I did it . Now I think I'm heading back that way , my husband is so worried , tonight it suddenly hit him just what do for the family and just what I have achieved and he is so upset by the thought of me being in a wheelchair again.

I have spent most of yesterday in bed ( or on it ) asleep or trying to talk about upstairs very shakily , almost as if my whole body is going through a shaking bout at times. I am worried about my future and how my family will cope if I am 'legless' but then when I think about this , at least I will still be with them , at least I will be able to do things from my 'wheely-chair' and make people laugh , it was inevitable that my condition will move on and as an adult I have to except this, however hard it may be .

So with this I will trundle into the kitchen and make myself a cup of coffee at now, 4:20 am in the morning , give myself a good talking to pulling myself together again putting on my face of ' I'm alright , who me ? No , I'm fine ' then crawl up the stairs and without squishing any spiders who happen to be lurking on the stairs or in the hall as its time for them to come in again .............go to bed and dream of meeting Corina at 11 .30 am today in Cornwall .

Willows ..................a bit fed up with her life at this time .

[Maggy]

Hi willows

It,s nice to hear your story although im sorry that its such a tough time for you at the moment, all i can say is that i am also battling along the same lines, i am also only able to sleep a couple of hours a night and the ants visit me regularly as well !!!!

The good news for me and i hope it will be the same for you is that i have recently been suffering exactlyy the same problem with eating and speaking it was scary at the time because i do continue to deteriorate with new things happening to my body all the time.

The good news that i was getting to was that it was only a temporary glitch and it lasted for about two or three weeks and then disappeared.

I also struggle with the same battle of trying to stay out of my wheelchair but i have now come to the conclusion that my family and myself are better off if i use it, at least then i can spend quality time with them rather than taking ill and having to return home.

I noticed you said you had angina attacks due to lack of oxyygen, i have not been diagnosed with angina at all but i have been prescribed oxyygen just to use for occasions like you descibed, i wondered if this would help you at all?

I wish you all the best and hope you feel better soon.

Take care.

Maggy x .

[pat57]

You and those spiders, go to bed!

Don't push yourself TOO hard!

[Rachel]

I'm so sorry to hear that your health is continuing to get worse, Willows. Thanks for letting us know what is going on. It sounds like quite a battle you're fighting.

It is so hard when people don't understand just how bad we feel and brush invisible illness off as if it were nothing. I'm glad your son was there at the museum to stick up for you, take care of you, and bring you home.

I hope that you are feeling well enough to enjoy your time with Corina today. If you're able, let us know how your visit goes!

Hugs,

Rachel

[mom4cem]

So sorry you are feeling bad. You are quite a brave soul, you keep on pushing through. I hope this rough patch, is just that, a rough patch, and you will be back and mobile again real soon.