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Louby
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Hello Everyone,

I'm sorry that my very first post is rather "down in the dumps"... it was not my intention, however at the moment I am going through a really bad patch - I think I found this site just in time!

I was diagnosed with POTS about 18 months ago, things have changed with my condition over the last couple of months, I had not anticipated that I would end up with new symptoms, or that the condition would get worse, which it appears to have done.

I have been trying to convince myself for ages that I am going to get better, or that I can cope - in the past I have had bad times, but have seemed to have coped, at the moment I am finding the situation I am in really difficult. I am so glad that I have found this web site, so that I can gain inspiration and advise from people in similar situations to myself - and go back to being in control of POTS and not POTS being in control of me.

I am really looking forward to hearing how other people have managed to drag themselves back up, the worst thing is that I am constantly exhausted at the moment and just don't know how to go about making this better.

Any advise greatly received!

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Guest tearose

Hello Louby and welcome!

You are in a great place to start this next leg of your journey with POTS. I'm not here long either but that doesn't matter, just share what you can when you can and you will start to feel like you are among old friends.

If you can manage, take a beverage of your choice and sit with your laptop/computer and scroll through these archives. You will see that some people who are feeling really well today, were stuck in a rut just 6 weeks earlier dealing with a challenge. You will learn from what you read and hopefully regain your confidence in taking "one step" today to help yourself. Just please know that you are on your own schedule with your own health challenges and your uniqueness... if you need to take that step tomorrow that is okay too. Just begin to visualize what your next step must be.

Write here too and you will find support and strength from others like us!

What works for me is a combination of very small goals which must change depending on how I am feeling. Since I'm just recovering from a sinus infection that sent me into a "pots-hole" my goals for today are rather limited but realistic for me. ... to get up and dressed by noon today. Get to the food store for fresh vegetables and to clear off the dining room table. Put dinner on the table. That's it! Anything else is extra. I also must not push myself so as not to fall into the potshole again!

Tell me what you do to manage the pots. Do you have a good handle on it? Do you have good doctors? Are you able to get out, do you work? You have me...write back soon... tearose

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Hello!

I am lucky in that I was diagnosed so very quickly, and that I have a fabulous Doctor - Professor Mathias.

I saw him just yesterday and now I have to go and see another professor, I have hypo-extensive joints and (I believe quite recently) he has proved there is a connection between this and POTS.

I have a reasonable handle on my condition, but at the moment spend most of the day light headed and I am so tried. I am just unable to sleep at night, and in the mornings it is almost impossible to stand up. My weekends are spent sleeping on the sofa - I do have a job, as a Sales Manager in London - the job is reasonably stressful, but I don't let it get on top of me.

I could not ever tell my bosses the full extent of my condition, this would be employment suicide - I can't afford not to work... At the moment when I have a bad day at work, I read - thus far I have been able to get around the bad days like this. Over the past couple of months, my symptoms have been getting worse - I guess I'm frightened as I used to have a good handle on this, and now I don't - like the way you describe this as potshole, and the way that you set yourself targets - I shall do this, and hopefully with little steps I will feel better. I wish you lots of luck on your steps today, and hope you soon start to feel better.

I have already found some really interesting threads on the forum, and it' great to know that people like you are out there - thank you so much for the support.

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Guest tearose

Good plan! That's the spirit. While you are working your way through the tests and fatigue I highly suggest that you try support panty hose! Once I get them on in the morning my heart rate come down 20 beats per minute and I'm feeing better.

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Chronic Illness 101

There is no control. Getting use to this reality is probably the hardest thing we have to face. If the thought is too hard for you to bear right now ... that's OK. I can't face up to the fact most days myself.

Fact is most folks go through their lives with the illusion of ground under their feet. They *feel* in control and most of their experiences help to bolster the fantasy. It's not until we get swept off our feet, like we did in the case of POTS, that we begin to get a real sense of the groundlessness and impermeance that we all are facing.

Is there hope ... sure we can have hope. But when we focus on the future we may set ourselves up for more pain and suffering. Instead of looking at the "big" picture, it may help to narrow the scope and just focus on the "now". Right here, right now, at this tiny moment. POTS can be our gateway to really finding out what is important ... and what we can let go.

I read a wonderful book recently by Eckhart Tolle (afterall what else can we do while we are lying down waiting:-) it was the Power of NOW. In it he mentioned that "illness" did not exist in the NOW ... that it had to have a past (I've been sick for 5 years) or a future (what am I going to do at the meeting tomorrow) but in can not exist in the NOW. Pain may exist in the NOW, disability ... but not illness. I really liked that and I try to remind myself of it when I start to go into my mind-made worries.

Don't worry about sounding like a "downer" here. This is a good place, with a wide range of good people who are living with a wide range of abilities. It is comforting. Welcome.

Good thoughts your way,

EM

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