The Day Seems To Have Come - Again - When I'm Once Again Completely Housebound.

[blueskies]

I've been here before and worked my way out of it. By the grace of the gods and as well as determination.

Today I need to go down and organize a "6" birthday cake for my grandson as well as party food and colorful party plates and cups and

Happy birthday banners, and I have realized that I just can't do it. I'll be lucky if I get to my gp appointment and he's in the building next door. Everything has ground to a halt, again. I had the cold sweats all night alternating with skin burning. And it's not a virus. I'm frigging housebound again with pots and I recognize this place because I've been here before. The long slow slide this time has ended in a wall. And I've seen this wall before.

And my husband, who is already impatient with me being ill, is not going to like this one freaking bit. He still thinks I could 'just do it' if only I wanted it enough. I feel like shite. If I had cancer, i suspect that some people, at least, would understand. But this is just me being difficult and not trying hard enough and maybe a little bit crazy. I've heard all these judgements. From people who love me, no less.

To the peole i love in my life who will never read this: I get it.It's hard for someone you love to have a long lasting illness because then, if you don't turn up to help occasionally, or just to visit, well then....you get to feel like you aren't being kind and caring. So it is better to accuse them of it being their fault and within their control. Even if you don't say it out loud, it is in your manner. The way you talk to me. With dismissal and disrespect or worse, silence. That way, you don't have to feel bad about yourself. I so 'get'that.

But I have a wonderful sister who does try. Of all the people whom I love, she is the one who has succeeded in being kind and caring. And she insists that she gets more from me than she gives to me. I know that isn't true. But I love her more because of her determination to make sure that she knows I matter. And that the person I was for 46 years did not suddenly become crazy, lazy or weak of character. 12 years of this stuff and she remembers the strength of my character, and sees it still. She knows that my inability to do normal everyday stuff is not some capricious choice I have made.

I'm not sure how long I'll be down. I would be crazy if it didn't occur to me to worry if this is my new normal permanently. I can only just hope it is not.

Blue

[writerlymom]

Blue, your feelings are completely understandable ~ but there is every reason to believe you will come out of this. POTS requires more patience than a person should have to summon! Sending a giant hug.

[looneymom]

I am so sorry Blue. I know this must be frustrating. Is there anything that could have caused this? Try and think back to the last time it happened. Could it be increased stress, change in exerise, meds, or diet? Trying to figure out what causes a set back can be very frustrating. Hang in there and it will get better eventually. Family members will have to adjust and understand. You cannot prevent set backs but you can set limits if you know what your body can handle. Rest and listen to your body.

[blueskies]

thanks writerlymom and Rachel,

Thank you both for your thoughts. And Rachel, you are right. I've been under a lot of stress. My father died late last year and one of my adult children is not doing too good -- he's extremely depressed and I am really worried about it. I'm trying to help him, but it's so hard to help an adult child unless they specifically ask for it. You can't insist that they 'must' come 'home' and be cared for. I just feel the help he will let me give is not enough.

I'm not quite as low as I was this morning. I didn't feel quite so bad after I rang the cake shop and ordered cake and other stuff for the party for my grandson. The bloke who answered is French and I can only hope he gets my grandson's name right. I had to repeat it a number of times and even I muddled it up once (brain fog)And then I got onto the supermaket site and ordered the hats and birthday banners etc. I did make it to the gp next door and he remarked, first thing, how well I was looking. Then took my bp and pulse and got numbers he didn't expect given 'how well' I looked, although I certainly wasn't surprised. Rapid pulse rate, high bp (despite bp medication). He actually kept me there talking for long past the usual time allowance for a consultation --and meanwhile I was experiencing pre-migraine symptoms (that so far haven't gotten worse) and I was in my dark glasses and sort of sprawling in the chair to minimize having to be upright. Then he took bp and pr again and the numbers had gotten higher (from sitting while talking).I know he realized that although I might be looking good I was feeling like ****. So it turned out to be a worthwhile visit in that he's seen POTS in action up close and immediate. And now I'm back on the couch at home.

I just feel gross. I'd like to have a shower but it's not going to happen today. Yuck? After a night with the cold sweats.

On the upside, on the 'trip' to the doctors, 2 people commented on how nice my sunglasses were. Which I'm taking to mean they are so hot looking no one seemed to wonder why I had them on.

blue

[Mermaid]

Blue, I am so sorry that your symptoms are taking this downturn. I, also, completely understand your feelings about family and their reactions to this illness. I'm pleased that you have your sister that understands.

Hoping that things improve for you very soon.

[blueskies]

Thanks Barb,

I am so grateful that I have my wonderful sister. It's not like we see each other a lot but I know she's there to help me if I really can't work out how to manage something another way. And we talk on the phone so often. I have 'wicked' humourous text conversations with her too. We can 'talk' for hours -- texting back and forth on the state of the nation, the state of our families, the state of Bold and Beautiful, how both of us are aiming to have that -slim, lean, long brown haired Southern European look with fantastic style' when we are both overweight, Irish descent and I'm greying and spend most of my time in pjyamas, LOL. We talk books, the ridiculous social norms we all seem to live by. On and on. She keeps my mind active and engaged. And I spend a lot of time laughing with her. She's a light in my day, that's for sure.

blue

[SarahA33]

Blue,

I'm sorry your going through this. I think most of us can relate to some degree. I realize what a challenge it is to just get through the day (and night) and then to repeat the next day all over again. I tend to not talk to my close friends and relatives about things because I fear they'll mistake it as complaining, which I'm not. I'm being honest. I have made very good friends with POTS that I don't have to worry about that with. They understand me better than people that have known me for 20+ years.

My fiance tries his best but gets frustrated quite often even if doesnt admit it al the time. I get the eye roll or the sigh or the "are you kidding me?" or my personal favorite one that sets me of "Maybe if you came to work out with me you'd have more energy" It's hard for those who havent gone through this to realize how hard it is for us.

I'm here to talk if you'd like. Just remember we all just do the best that we can. Hope your party went well and you are feeling better.

Sarah

[blueskies]

Thanks Sarah,

my grandsons were sick on the day so my preparations were wasted. I'd organized everything and then was not the one to let everyone down. It was just unfortunate. They my son told me they coming on the Monday for the party, then the Tuesday (my son and daughter in law downgraded the celebrations to them just dropping in to visit with my husband and myself and so my 6 year old grandson could get a present from us. He was so disappointed and I've promised him a cake on another day. But I spent days expecting for them to be well enough to come and I had a whole lot of anticipatory anxiety- hoping that I'd be well enough to come through for them when/if the party happened. Plus my daughter asked me to look after her little girl -- not quite 2 years old for about 4 hours on the Tuesday and thankfully, at the last moment, I was told that I wouldn't be needed (but could I mind her for an hour or two next week (ummm. yeah?????).

IT was no one's fault this happened but I was left hanging with this fear that I would disappoint, said yes but I wanted to say no. I love all my kids, and my grandkids delight me, but I can barely look after my most basic needs let alone take care of little grandkids.

I have real problems saying no to my kids (and thus my grandkids). I know that my kids just don't understand how sick I get and, often, how much pain I am in. My frustration will leak out in bits and pieces and when it does I can see they don't want to hear it. But short of all sitting them down and telling them to stop asking me to do things for them, I'm not sure what I can do. My husband is not particularly sympathetic about this. And they tend to take their lead from him. He does help me out quite a bit at times and he is the breadwinner for himself and I. I don't minimize what he does do but I do struggle to have any quality of life now, and that neither my husband and kids understand this does get upsetting.

When I was well my life revolved around my family. They had 28 years of me being there for them and looking after them. I realize what they expect of me. But I'm not capable of doing all I used to be able to do for them and it's like they have blinders on. Do they not see that I'm always in my pyjamas when they come to visit. And that I rarely go anywhere. This is not the woman my kids or husband knew for 30 years. Yet, I feel like they think I'm being capricious or something. I suspect that they really do think I'm just 'not that sick.' I don't expect my kids to look after me but I do want them to stop expecting me to do things and minimizing what I do manage to do, as being 'nothing.'

I want to be the strong healthy woman they knew. Not only for their sake but my own. But it looks like this is just not going to hapen, and at age 58 it's not as though, even should I recover from POTS, and EM and chronic migraine, that I'm going to be the younger woman I was before I got sick. I'm 12 years older and at nearly 60 that time sees profound changes in the capabilities of even the most well of people.

blue

[SarahA33]

Hi Blue,

i wish I knew what to say to make you feel better about this... what a shame all that anticipation and effort you put into your grandson's party didn't work out. I'm sorry. I have a family party again today and I feel like dirt. Nobody realizes how hard it is to do "normal" things and not be exhausuted or bedridden for a few days after. It's easy for my family to look at me and think sometimes, "She doesnt look sick". That famous old saying. I know they mean it as a compliment but it infuriates me. I don;t remember if you mentioned before how long you've been diagnosed?

Your kids are very lucky to have you, and they know that. But,not it's time for you to take care of yourself. I can tell you seem like a good person who puts others first.. I remember when my doctor pulled me out of work he said, "Something has to give, and I won't let it be you" He was right. I've been sick since i've been 20 and struggle like we all do. I try to distract myself but it's easier said than done.

Your husband sounds similar to my fiance. It's hard for them to feel helpless and to see you so sick. There's nothing they can do to fix the problems and the problems that we have are rare and misunderstood. Has he attended any of your doctor appointments with you? Maybe that might help him undersstand how sick you are. Hang in there and know that you aren't alone.. - Sarah

[blueskies]

Hi Sarah,

Thanks for your thoughtful response.

I am giving my situation a lot of thought. A time for action is called for. I am not in prison with all my rights taken from me although sometimes it feels like it. The 'woe is mes' is not working for me. No one is going to change how they treat me unless I change my attitude first. I think it was Eleanor Roosevelt who said something very similar, but in a much more eloquent manner. They were bright people, those Roosevelts.

blue

[SarahA33]

"When you come to the end of your rope, tie a knot and hang on" - F. Roosevelt.

Yep -- bright people :-)

hang in there Blue, it'll get better.