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.

Hi JJB, My EDS Doctor told me that most nausea associated with dysautonomia is more likely to be EDS than autonomic bowel problems. I know there are times when the whole body is thrown into disorder and food just doesn't go down, but I'd imagine that our brief episodes of nausea are EDS-based. Janey

Hi Julie, I heard that injecting botox into the intestine actually helps retrograde propulsion. Do you know if this is true? Janey

I'm exactly the same with this, Sara. Exactly as you describe. Would you say it is our EDS or our POTS or both? Janey

Dear Noodlemaster, I am also from the UK and had a lot of problems getting diagnosed. Like in your case, I was more interested in my own health than any of the Doctors who saw me were, and they put my symptoms down to anxiety and IBS. How they managed to attribute heart symptoms to IBS, I have no idea, but basically, I believe the UK has a long way to go when it comes to learning about autonomic conditions. Because my Doctors cared so little about my treatment, I started to think that I was just making a fuss about nothing and that everyone experienced these things but just put up with them. Well that's not the case, so don't just pass those symptoms off as "mild" because they're not. From my perspective, it sounds like you have POTS, and if you are tall and thin, I would look at the possibility of you having Ehlers Danlos Hypermobility. There are a people a lot better qualified on here to answer your specific question though, so if they don't think POTS is the case, I'd listen to them. When I finally got my diagnosis I went straight to the UK POTS specialist Professor Christopher Mathias. No other cardiologist or other doctor was good enough. He replies to emails (I can send you his email privately, if you like?) and I'm sure he can help and recommend what you do next. Janey

Earth Mother, I am SO similar! I prefer to interact via writing/online than actually speaking face to face. I feel like people have more expectations of me in a face to face situation than they would do online. So I can go under the radar for a few days when I have friends online, but I can't run away when they're right in front of me! I go one step further in that I love it when my partner is away too (even though I like him being here as well) and don't have a problem at all with being alone. In fact, I've had some of my happiest moments alone! That's very sad isn't it...! Janey

All these posts have really made me think. Especially someone who said "Anyone could get a disease." It's so true, and I remind my partner of it constantly. He is nearly 20 years older than me, and I make it clear to him that it will likely be HIM who is dying first, HIM who will get ill and ME who will be taking care of HIM. At some point in everybody's life, unless they are eternally blessed, they get some sort of illness, condition or disease. it's just that we've got it now and we're not in the usual age group that gets chronic conditions like this. We're experiencing what it may be like to be elderly people with really chronic problems, but it's happening early on. I had an acupuncturist who once said "you are blessed by getting ill early in life." And I said "why the **** do you say that?" And he said "Because from now on, you will always take care of yourself. Health will always be a priority for you. You've been given an early warning - not many people are blessed enough to receive that." For all my partner's faults, he also does have a saying which I think is definitely true about relationships. "If you think the grass is greener on the other side, you will just find the same s*** and a different person." So for all those people whose partner's have left them because of their illness, they haven't got away with dealing with what they essentially couldn't handle - it'll just come back to them in another form! Janey

I can totally understand how you feel on this one and I do have some thoughts on it. The main issue seems to be the question of how to not get into a carer-patient relationship so soon or at all. I actually think there are some men (and women) out there who really like the idea of being a carer, and actually seek out people to look after because they need to be needed. There are others who resent it (like my partner!) and those well-adjusted people who manage to care when its needed and withdraw when its not. In that respect it really depends on his personality and how he deals with suffering in himself and others. Do you think it's too early to judge that? Do you think you can keep things fun and healthy (at least in his eyes) until you've been together a bit longer and can see how his character would suit your lifestyle? I can also understand your fear about feeling that he'll initially be really caring, and then after a while he'll find it annoying and cumbersome to have someone who is always getting ill. I have some male friends who have romanticized my illness; they feel they want to protect me and I think they actually feel like there is something "special" about me because I get ill with Dysautonomia. But I know that if they experienced the daily reality of living with me and Dys, they would very quickly become quite bitter. Because it's not glamorous - it's day in day out chronic illness, trips cancelled, meals uneaten, incontinence, vomiting, every night spend inside lying down, non-existent sex-life and trips to the hospital. In my own experience, my partner and I have gone too far into my illness together over the past two years and it has made him resentful. I've found I have to take a huge step back and "be my best for him" again just to balance out the relationship. That means taking the time to close to door to the bathroom when I'm sick and be ill by myself rather than leaving it open and including him in it by simply allowing him to hear it. I've also started trying to have dinner ready for him when he gets home from work and not be laid out, pallid on the sofa. It's working so far. I'd say it's a balancing act from the moment you start out together to your dying days together, more so than in other relationships where one partner isn't ill. Janey

Thanks guys, really helpful. Will see how I feel tomorrow and then make a decision whether to call my Doctor. Will also try gatorade and broth. Janey

Melissa, thanks so much, this has answered all my questions about cannabis and Dysautonomia. Janey

Hi Guys, So this flu still persists, it has made me worse than ever and I haven't been able to keep food down for three days. I'm hydrated enough because my body is accepting water but it is not doing food (or liquid food like soup). At what point am I supposed to go to the hospital? I feel weak, obviously, and my heart is going crazy, but I don't yet feel so bad that a hospital visit is warranted and I've never been to the hospital because of POTS before apart from my regular check ups with my cardio and neuro. Any suggestions? Janey

That is exactly what happens to me, too! I'm able to differentiate POTS-related GI problems from just a virus by seeing if I feel a bit better while lying down. I always get a migraine with my abdominal pain/vomitting. The only thing that helps me is lying down, quiet room. lights off, and maybe a little phenergan. I'm sorry about the rough weekend you had. I hope you feel better soon! This has really helped me, thanks guys. To know you both do this has reassured me that the vomiting/nausea wasn't from any other cause except POTS, because it's ALWAYS better when I lie down. Janey

You get this too?! How do you think it is related to POTS/Dys? Janey

Does standing up and walking around aggravate your other symptoms too? Not only do I feel lightheaded/dizzy/nauseous when I'm upright, I also occasionally get stomach pain/all over body pain, bladder problems, bowel incontinence. It's like I have already run a marathon when I stand up. If I have taken my salt tablets I am usually fine with the BP and HR but it's actually other symptoms which force me to lie/sit down again (as in I'm in too much pain to stand up and walk around) Anybody else get this? And do you know why? Janey

Cat Lady I'm so sorry you're feeling like this I have no idea what to say, though, as I have no experience with stuff like this. I'm just going to bump this up the list so that others might read it again and see if they can help. Janey

There has been an influenza going round my group of friends. Everyone's had it, now I've finally got it and I literally cannot move. Nobody understands, because although it was bad for them, they could still make it up the stairs to bed, but I literally cannot move at all. I'm just going to be lying here for days being waited on. They just don't understand how I get it worse than them. Is it the POTS? It's the temperature changes that I'm finding the hardest.. and the diarrhea, I just can't keep enough water in. Nobody understands and thinks I'm causing a fuss! janey

Hi! Nausea and vomiting are my most common symptoms from Dysautonomia and they get a lot worse and verge onto repeated vomiting when I'm going through physically and emotionally stressful times. I take meds meds meds, compazine (or if you're based in the UK it's called stemetil) is the most effective in dealing with it. I also find, if I can spend most of my day lying down then I don't get sick. I know you don't have time to do that at the moment, but taking a few minutes to lie down when you think you're about to chuck might help. So sorry to hear about your loss and so sorry to hear about your symptoms, I am completely there with you and do understand. janey

I have taken VSL 3 for long periods of time, and I have to say, it did nothing for me. It didn't even improve my gas or cramps or any of the apparently bacterial overgrowth related problems. However, it HAS helped a lot of people, so I would not discount it if it didn't work for me. I feel you on the digestive stuff, feels like it'll never go away. And there is only so much GI doctors can do apart from stuffing you with pills. I am thinking of you, hope you are okay. Janey

As well as all the HR and BP stuff what other stuff do you feel in the morning? Having EDS, I wake up with a couple of things out of joint and pains in different parts of my body. I also always wake up with some sort of colic-feeling in my stomach, lots of gas and a slight headachey-migraine feeling which comes from being very dehydrated upon waking. I always feel seriously hot, like I need a cold shower, even if it's not particularly hot. Do you all get this too? Along with the postural hypotension? Janey

I get the same. I had it all my life and didn't see that it corresponded with standing up. It's actually a feeling of despair for me, but I've learnt to just live with it. I'm hoping that my Doc will put me on anti-depressants when I go to see him, which may even out the feeling a little bit. Obviously it's something to do with blood flow or the transportation of chemicals in the blood.. too complex for me to understand, but I'm pretty sure it's a POTS/Dysautonomia thing. So sorry to hear about the death in your family. Janey

I'd had very mild POTS and Ehlers Danlos my whole life (without knowing it, I was virtually asymptomatic apart from having exercise intolerance), then I got really severe bowel problems from a parasite I caught in India, which I knew couldn't be attributed to *just* IBS or *just* indigestion so I looked very long and hard for why they were occurring, along with other symptoms I had like racing heart, lightheadedness and low blood pressure. It turns out, after I went to India and got the parasite infection, it set off very bad bowel symptoms, and eventually bad POTS (even though I had a tendency for dysautonomia my whole life so far, this was just the chance for it to appear.) Bowel problems and nausea are still my worst symptoms, far worse than my POTS which is easily controlled by salt, although the POTS fatigue is extremely debilitating too. What's your story with bowel symptoms and what are your main bowel symptoms? Janey

I've found the best thing I can do is walking, on flat roads (no gradients), not carrying anything. On good days I can walk for a few miles like that. On bad days I can't even get out of bed. Also I find drinking while walking helps.. little sips.. Also distracting myself, either taking a dog for a walk or giving myself a mental project or topic to think about so I don't dwell on how much I really don't feel like moving. If I was in a cardio class like you, I don't know how I'd cope! Especially with people misunderstanding what is wrong with me! I remember going to the gym when I was younger and just feeling so bad about myself, that I was weak, felt like I wasn't able to "push through" the pain barrier that my personal trainer talked about, but soon realised I wasn't like everyone else! Janey

That explains EVERYTHING. I've been put on cipro a million times and it has ruined me. Thank you, Maxine. Janey

I wish I could get to the point where I could feel that my symptoms were stable. At the moment I only feel like they're getting worse, something new comes along every day. Then again, compared to some cases on here, I don't have it as bad - so it's all so relative! I keep thinking that if I went on the "perfect" diet and took the "perfect" exercise routine and had the "perfect" medication regimen, then all would be okay, but maybe that's an impossible idea. Janey

Hi Emma! I've been slow to getting to this message, but welcome to the forum, it's the best place I've found since getting ill! I live in Oxford and am in London very regularly, so if you'd ever like anyone to meet up with and talk to, I'm just round the corner. Janey