Coming To Terms With Illness

[Janey]

I know there have been a few threads recently, especially started by the mid-twenties people on here, talking about the feeling of coming to terms with what life has thrown at us. I've had quite a long period of struggling with this, and I think I might finally be coming out the other side. All my life I've cared so much what other people think of me and constantly compared myself to my peers. Obviously this has led to a lot of unhappiness (as comparing yourself to others never works) and never more so since my dysautonomia became bad. Before all this, I got a good job because I thought it would make me feel better about myself, and a life based around keeping up with the success of others. But it all changed, and as my peers go galloping ahead, I'm stuck lying on this sofa, day after day after day.

I suppose I'm slowly developing an internal strength now which stops me from getting affected by comparing myself to others. I'm beginning to feel like, as long as I'm happy, and surrounded by the people and things I love, everything will be okay. I know that's the answer, and I know things will blossom in their own way with this alternative life, but I still feel like I'm grieving the shock of realizing that most things I took for granted as being a natural part of my future life, probably aren't going to happen. I feel like I've lost some of my pride and now I've got to gain it back in a way which suits this lifestyle.

I keep wishing that other people would be happy for me coming to terms with everything. My Mother keeps calling and saying "Don't tell any friends of the family that you're not working... it looks bad." Or "Don't tell anyone you're ill, because people don't want to hear that. It creates a difficult atmosphere." My parent's see the main issue as being "how can she get back to her old life as quickly as possible?" and they seem to think that me seeing gastros and neuros and cardios is "treatment" rather than "management." No matter how hard I try to describe my situation to them, they don't understand - I think they're in denial. It would be so much easier for me to be at peace with all this if they had made their peace with it already. I'm worried I'm going to have to face the next few years with them thinking I'm a hypochondriac, or feeling that they have to pretend I'm someone I'm not to keep face with friends and neighbours.

Anyway, that's where my rambling thoughts end really. Any similar experiences, advice or reassuring words would be helpful here.

[janiedelite]

Hi Janey,

It would be really difficult to accept my limitations if I had family regularly telling me that I should be doing more. I'm not sure why your parents are in denial... maybe they don't want to face that their little girl will always be suffering to some degree, or maybe their identity is wrapped in what they think other people think about them. Either way, it might be a good idea to limit the amount of communication with people who are heaping on the guilt.

I'm so blessed with a supportive husband and parents. My mom has been disabled for over 5 years from a rare cancer, and she has been so helpful with my coming to terms with not working (still not totally there yet, though). I occasionally have a better day and the first thoughts running through my mind are "when can I go back to work?" Then the next day, or hour, or minute, my symptoms remind me of my limitations. So for me, I honestly don't feel I can entirely give up on going back to work ever again. Maybe there will be a medication that will help me regain more function, or maybe my post-viral POTS will go into remission? So instead of continually cycling through despair as my hopes for working are dashed over and over, I decided to try baby steps and volunteer at my husband's school for a few hours a week. I've tried to go for two afternoons a week, but my fatigue and other issues have only allowed me to go one afternoon a week. I figure that if I can work as a volunteer for 5 days a week and still have tolerable symptoms, then maybe I can go back to a part-time job. Well, it's been 2 months and I'm still just volunteering one day a week. It's okay, though, because I'm just glad to get out of the house and interact with human beings!

I was surfing through Facebook a few weeks ago and came across a recent picture of my coworkers taken in the recovery room where we worked as nurses together. Their lives have moved on. But as you say, here I lay on my couch. Seeing the photo brought up a lot of grieving. Losing your job is definitely a grieving process, especially if you don't know when or if ever you can go back to work. But I try to focus on the silver lining that POTS has given me: I've realized more and more that my life is not measured by what I can do, but by the quality of my relationships with others, with God, and with myself.

It seems like you're developing a healthy way of viewing your limitations and staying happy without anyone's help. Don't let anyone lay on guilt over what you cannot do anymore. Feeling guilty is a sure way to make us feel sicker, for one thing! And your job now is to take care of yourself, which is a full-time responsibility!

Hugs,

Janie

[futurehope]

Janey,

It sounds to me that in addition to coming to terms with your illness, you are also disentangling yourself from a mindset. Your parents put a high value on appearances and you realize that you are not "appearing" sick on purpose, and that you have no control over your disability. Your parents are waiting for you to get better. Well........you may or you may not, but your limitations are here and they seem to have trouble understanding.

Prepare your mind when you interact with them. Prepare to be misunderstood, and to be told to "pretend". Because, it sounds like this is the way they are, right?

I know these are your relatives and that you want a relationship with them, but just be prepared. Maybe over time they will come to realize your limitations.

I do agree with one point, though, and that is if illness or disability are mentioned too often among "healthy" people, they tend to turn off. There are exceptions to this, of course. So, in general, accept what is, be matter of fact about it (no looking for pity, and no self-pity), and others will notice your acceptance of yourself and they will be more comfortable around you.

Do not take this to mean that you are to avoid asking for help, just know which people would be most available and helpful beforehand.

The more you are accepting of yourself, the more comfortable others will be around you. You learn after a while, who you can share certain things with.

[Mrs. Burschman]

Janey,

I'm happy for you coming to terms with everything. It's not easy. We're here for you.

Amy

[Janey]

Thanks for all your support guys, I knew you would make me feel better about it all.

Janey

[erikainorlando]

You hang in there. This is a very disabling misunderstood illness and it is frustrating for those who love us along with ourselves.

I am not really good at "appearances"....I kind of telll it like it is but my family does support me....to some extent...whenever I mention being ill by mom syas she gets too nervous and then starts with why aren't the doctors helping me...oh boy

Anyway..some days I am more exceptng and some days stink. My kids really help. But I have learned that if I don't validate what I feel and am going through then neither does anyone else. I don't like to be around people who don't support me. So many times I don't call my mom.

OK so I have no advice really...but I do understand.

Erika

[maggie]

Janey,

It's good to read that you are coming to term with what is taking place in your life at this point. I think that's one of the hardest struggles to overcome. As a parent I guess I can see your parents view although it would be so much easier on you if they could accept the same outlook as you. As a mother from the time of your child's birth one begins to dream of what lies ahead for you child, and I can certainly tell you pots is not on that list of dreams. Maybe it's going to take her longer to understand then you. No mother wants to hear that their child even adult children are having medical issues. Maybe she could go with you to one of your doctor appointments to help her understand what is taking place, it might help her to understand better. Have patience with your family hopefully one day they will be your best supporters.

Maggie

[heathmcev]

Janey,

Thank you for writing this! Last night was one of those times for me when coming to terms with my limitations, and where my friends are in life compared to me, was just not working. I'm in my early 30s and have watched my friends get married, and now start to have babies, and move up in their careers, and here I sit. More than anything I miss my options! Before, I lived anywhere I wanted - new york, london - worked my butt off and traveled. Now I'm living at home with my parents and feel stuck! Hearing you talk about coming around to the other side gives me hope! Somehow I have to get there - as we all do. It's just so hard! And it's amazing how much our loved ones affect our ability to do so. My parents have been really supportive - most of the time. They definitely have their moments and I think they are also of the mindset that this isn't long-term and at some point I will be able to have a career again. My POTS neuro told me my case is most likely mildly progressive - so I've been struggling to come to terms with that while everyone around me is saying to get treatment and get better!

One of the best things I did was take my mom to my POTS neuro appointment this week. I'd been going alone, so she offered to keep me company. I decided to ask her into the office to take notes since i'm often too busy answering the dr's questions and being examined to write. In the process she came to a much greater understanding of what this is all about. One of the best parts was that she actually heard the dr say that he can't explain certain aspects of my illness because medicine hasn't caught up yet! Up until that point I think my family had been looking to me to have all the answers. That doesn't mean she totally gets it now - but it was a HUGE help! Janey, your situation is certainly different - and it sort of depends on your dr's approach and whether you'd feel comfortable opening that private space up to your family. I hesitated at first, but in the end it was a good decision.

Speaking of appearances: how do you all handle putting on a good face for friends vs fessing up to how you really feel? who wants to be the downer friend talking about her chronic illness, right? It's hard to walk the fine line between letting friends know what's going on so they can be there for you - and being a bore. i'm so self-conscious of this! i always feel like it's a bummer to talk about my situation, so I hesitate to tell anyone at all... then of course they can't support me because they don't know what's happening!

[Janey]

Janey,

Thank you for writing this! Last night was one of those times for me when coming to terms with my limitations, and where my friends are in life compared to me, was just not working. I'm in my early 30s and have watched my friends get married, and now start to have babies, and move up in their careers, and here I sit. More than anything I miss my options! Before, I lived anywhere I wanted - new york, london - worked my butt off and traveled. Now I'm living at home with my parents and feel stuck! Hearing you talk about coming around to the other side gives me hope! Somehow I have to get there - as we all do. It's just so hard! And it's amazing how much our loved ones affect our ability to do so. My parents have been really supportive - most of the time. They definitely have their moments and I think they are also of the mindset that this isn't long-term and at some point I will be able to have a career again. My POTS neuro told me my case is most likely mildly progressive - so I've been struggling to come to terms with that while everyone around me is saying to get treatment and get better!

One of the best things I did was take my mom to my POTS neuro appointment this week. I'd been going alone, so she offered to keep me company. I decided to ask her into the office to take notes since i'm often too busy answering the dr's questions and being examined to write. In the process she came to a much greater understanding of what this is all about. One of the best parts was that she actually heard the dr say that he can't explain certain aspects of my illness because medicine hasn't caught up yet! Up until that point I think my family had been looking to me to have all the answers. That doesn't mean she totally gets it now - but it was a HUGE help! Janey, your situation is certainly different - and it sort of depends on your dr's approach and whether you'd feel comfortable opening that private space up to your family. I hesitated at first, but in the end it was a good decision.

Speaking of appearances: how do you all handle putting on a good face for friends vs fessing up to how you really feel? who wants to be the downer friend talking about her chronic illness, right? It's hard to walk the fine line between letting friends know what's going on so they can be there for you - and being a bore. i'm so self-conscious of this! i always feel like it's a bummer to talk about my situation, so I hesitate to tell anyone at all... then of course they can't support me because they don't know what's happening!

Hi dizzzyde, thanks so much for your post, I'm really reassured that others are thinking the same things. I wish we could all somehow set up an international company which we could manage from our couches and beds and just chat on the phone or webchat, and then have some sense of success, but no chance!

In terms of the way I handle my illness with people, it depends who it is. With my partner I'm as raw as it comes. He sees all the episodes and toilet dashes and crying and frustrations. My parents usually only see me when I'm vaguely okay, or just about holding it together. I can sometimes manage to hold an episode in for about 15 minutes and then when I can finally get by myself, I let it happen. But the longer I hold it in, the worse it is when I finally let it happen. I have a whole set of friends who haven't seen me when I'm ill but know what I have and are prepared for me to flake out on them often. I find those are the best and most healthy relationshops I have because they feel the most unconditional: They still invite me out and come round and they expect me to text/call and say I've had a crash and I can't come. At big family gatherings with extended family and friends of the family, I have to pretend I'm well. I really have to build up to it, and I usually get a crash the next day because I'm holding so much in and dosed up to the gills with anti-spasmodics, anti-nausea meds, anti-diarrhea meds, salt tablets, paracetamol etc etc. God it's exhausting! That's why I'm happier when I'm on my own or with my animals!

Anyway, I have just rambled... but it's good to talk. And thank you for listening.

Janey

[persephone]

Hi Janey! Let me know if you'd like to meet in Oxford over the next couple of weeks (this week is horrific, andnext week I'm out of town) but the week after that, starting the 8th of November should be good.

Would be nice to meet a fellow POTSy iin this kerayzee town and catch up with you

[Janey]

Hi Janey! Let me know if you'd like to meet in Oxford over the next couple of weeks (this week is horrific, andnext week I'm out of town) but the week after that, starting the 8th of November should be good.

Would be nice to meet a fellow POTSy iin this kerayzee town and catch up with you

Hi, yes it would be really nice to see you! I have to build myself up to come into town sometimes because even the people and crowds in central Ox (I now, it's not even London!) often make me feel ill! So Saturdays are out and weekdays are best. Maybe we should PM our numbers?