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Suzanne

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Everything posted by Suzanne

  1. I am on birth control pills to try and overcome the lows of period time. It is a bummer as my husband finally had a vasectomy last year! The pill helps, I have tried to just keep on taking them so I won't get a period, but they still come every month. My BP is lower, more dizziness, more lethargy and migraines during this time. I still get all the symptoms, but less intense. It is not an easy one. Maybe a hysterectomy? Only for those finished with having babies of course. Or, come back as a man in the next life!
  2. OK, I'm from Downunder, where have you moved to? Hope the unpacking doesn't leave you too exhausted. Take it easy.
  3. I read recently that someone had used this and found it helpful. It is based on our meridians in our body. I have been on the site and it sounds pretty amazing, maybe too good to be true? Has anyone had any experience with it and more importantly, had any good results? I am feeling like I need a breakthrough, I am sure I am not alone! Thanks
  4. Thanks for this, I found it really helpful and have printed it off. I need to affirm these rights myself as I find it all too easy to give in to others so they are getting what they need, at my expense. It is even harder to be assertive when you are not well as you feel that you are putting people out already, so don't want to make any more demands. However, in the end, you can only be responsible for yourself, so I am going to try and live these rights daily.
  5. Hi Julie, I am so sorry you have to go through this. I am sure this will take so much out of you, but I wonder about the toll on your health from having to deal with your family? I have had to sever ties with my family, I did it 2 years ago and there is a time of grieving. I so badly wanted to support my family and for them to love and support me back. It just did not ever happen and I just kept waiting for the day it would. It never came. When I finally stood up and spoke a few truths, I was shot down and crushed by them and they rejected me and my own family. It hurt so much, but then I realised that I felt so much better without the contact that used to leave me so upset. I still had all my POTS symptoms, but I found I could start focusing on my own children and husband and most importantly, on me. This was so long overdue and I am still taking only small steps as a whole life of being fitting in with their wishes is hard to change. You will recover, you can give your support to your nephew (he may not take your advice, but just knowing someone is on your side is so reassuring) and lean on those relatives who are supportive of you. It's not perfect, but it is realistic. Be prepared for the recriminations and guilt trips, mine are still doing it. On a positive note, my brother contacted me recently and we had a nice afternoon with both families. The big difference was that I had no expectations of him and made no promises of myself. We just enjoyed each other's company and some time later we may meet up again. It felt great. Better days will come, be kind to yourself, ask for help and hang in there. You can pm me anytime you want. Hugs Suzanne
  6. Thank you all so much for your encouragement! I am printing off some of the info to take tomorrow to my pysch. I agree that I don't know as much as I should about POTS, so when I am challenged about it, I am not able to argue convincingly. I get brain fog when I read up on it, but will take info to bed and read it, I am sure it will cure any sleep problems! I will be more informed from now on. I do have a real anxiety problem, but I also tend to get too submissive with doctors as I am not really sure how much is in my mind and how much is physical. Thank you again, I feel much stronger already.
  7. I am seeing a pyschologist for my depression and anxiety and she is telling me that my levels of fatigue are not caused by POTS. She says she has read up on it and it just doesn't cause someone to have fatigue for days and days. I accept that I have work to do regarding my anxiety, which results in me struggling to drive when I am really tired and dizzy. She says this is not POTS. She is saying that it is psychosematic (can't spell it). Does anyone have any views on this? Your thoughts would be appreciated as I am feeling quite upset about it. Thanks!
  8. Hi, I feel your pain, it has happened to me too and it is a horrible feeling. After a while, I tried reflecting on my actions regarding friendship: when I had dropped out of people's lives for reasons that they did not know about, and I unfortunately did remember that I had let go of friends, due to a divorce, moving away etc. I also have thought about whether my friends I have now, were they real friends at all and came to conclusion that I have actually deluded myself a lot about friendships I had. I thought they were close friends, but when I got sick, they disappeared or just came back to see if I had recovered. As I am still sick some 3 years on, they have gone again. It was hurtful, but then I realised that I have been shown kindness and friendship by a few people that I knew more superficially and they have been quite supportive. I really like the "friends for a reason, friends for a season" quote. I too have been slack with emails, sometimes I get too depressed to write as I will only be a grouch and someone else on this forum wrote that people do get sick of that. So, hang in there. I would love to email you and hear from you, as will others on this forum. Count me in as your new friend. Suzanne
  9. Hi, I am wondering about my dehydration problem. I have been advised to take 4grams of salt per day (6 tablets) and a potassium supplement, I think to counteract the effects of Florinef (?). However, I also drink 2 litres of liquid daily, half Gatorade, half water and I am always so thirsty. I wake up in the night so dry and just drink, drink, drink but never feel that I have had enough. It seems strange to take so much salt and then try and dilute it with water. Any feedback would be appreciated.
  10. You are not alone, I get this too. Is it just the extra exertion physical and mental? I know that sitting upright for long periods can bring it on. I am not sure if it is POTS or CFIDS or both? I have just been interstate for the weekend, took it easy but I am totally wrecked and it is now day 3 of recovery. My legs ache, my body aches, even my eyelids ache! I can't explain it medically but it is real and it is a pain!!!
  11. Hey Lisa, thank you so much for your informative post. I live in Sydney, Australia so will not ever be able to see Dr Grubb. My specialist is good, but does not spend much time explaining it all. I was impressed with a power point presentation!! I really found your info regarding exercise invaluable as no-one can seem to give me consistent advice about exercise. I am currently walking, but find it a bit scary when I get dizzy about halfway from home! I am also doing very light weights and Pilates. As a mum, i have found that you get strength from somewhere deep within to care for your child, so be positive. I did not rest enough when I had my kids, so would encourage you to keep resting, exercising and ask for help and you will enjoy being a mum. Thanks again for the info.
  12. Suzanne

    Book Lovers

    Great idea, just what I have been looking for without knowing it! I am going to set it all up tomorrow, it will give me something to look forward to. Thanks!
  13. Every time I start or stop a new med I get terrible headaches. If you are only new to this drug, keep trying and the headaches should lessen. If they continue, then maybe it's not for you. I hate headaches , so I am hoping it goes for you soon.
  14. Mestinon seems to be helpful for many, but not for me! I tried it twice, it made me worse and gave me terrible nightmares. But try it and see and good luck.
  15. If your doctor is supportive, he will refer you to a neuro. A neuro may have an insight that your doctor doesn't, after all, they can't know it all. If the neuro visit is not helpful, then at least you know you are trying all areas. I just don't think you should have to put up with this, it is too much, especially when you have kids to care for. I know the day after a migraine leaves, I take it very easy, so maybe you did a bit too much. But even so, you deserve to get the best help there is. Listen to your instincts and good luck.
  16. I feel for you, two weeks!!!! That is terrible. If I have one for 2 days I am stressed out. Have you tried osteopathy? It gently works on your muscles and is wholistic. My osteopath fixed my 15 year of migraines with a series of treatments on my neck. Nowadays i seem to get them from Florinef and any other drug that the doctors are guinea pigging me on. I really hope and pray you can get some relief. Hugs Suz
  17. Hi Elle, it is tough for you being young and wanting to achieve and succeed in a career. I feel for you. It seems from all the posts that there is a wide range of capabilities with POTS. You may need to take time to slow down, get some good medical advice and care and then reassesss. I would definitely not give up hope of working again, it just may be in a different way to your current plans. I have had POTS for 3 years and worked right through until this year and it was very tough. I just had to stop, my employer is supportive and is recreating a role for me when I am well enough, it will be more home based. I was in sales and walking up and down stairs for much of the day and didn't know it was so draining for my illness. I must admit that I am much more relaxed now that I am home full time, it is allowing me to get some help for my illness and not having to worry about how i will make it through the day at work is very beneficial for my health. I hope you can figure it all out and your health will pick up soon. Hugs Suz
  18. I definitely think Florinef contributes to headaches. I started on it 9 months ago and had significant headaches for a few weeks. Then it settled down. However, when I try any new medications, the headaches turn into migraines. I think Florinef does not mix well with other meds. I have found it helped my BP and dizziness, but did not solve problem. I am reluctant to go off it as my symptoms recurr. I also find that if I have any alcohol or too much sugar, the headaches worsen. Florinef seems to dominate my head space. Not sure what the answer is for you. You can trial going off and see what happens.
  19. Hi Scott, sounds like you have gone way too extreme. Your body is run down from the fatigue, lack of exercise etc and you need to build up SLOWLY. Even if you feel like you can do more, it will take it's toll and you may have a setback and lose your enthusiasm. I have teenage boys and know that they overdo it simply because of all the hormones, energy etc and they are healthy. So, I suggest you try walking for 20 minutes daily and see how you feel. Record how you feel and what you do and if all is going well after a month, I would add some light weights, I stress light!! I am glad that you are so keen, but please take it easy. As far as the weight gain, I keep it off due to stress which is not good. Take it easy Suzanne
  20. I have just started doing a Pilates tape and find that 15 minutes is enough! I also do some hand weights lying down. Another idea is to buy a Fitball, one of those great big balls you sit on. I lie down and lift it up with my legs and sit on it also. It is a great workout. I also use leg weights to do leg raises. As a chronic overdoer, I make myself now go slowly and gently. It is hard, but I am sure it will be worth it. Good luck
  21. I am sure a level of anxiety is normal as our lives become so challenging and we just can't do what we want, when we want. However, I am now experiencing a level of anxiety that is not normal and just starting treatment for it. Not sure if POTS causes it, or if it was lurking there and POTS just brought it out. It is real and it is a problem, so I would include it in your submission. Good luck.
  22. I think you have hit the nail on the head Cyber Pixie, "it is ingrained in my personality". It seems from reading everyone's threads that we are having to battle ourselves and our instinctive drives. This is why it is so tough on us all to find the right balance. I know that my natural way is to push myself hard, to achieve, to help others at my own expense, etc. Nurturing myself, knowing how to set limits and even harder, sticking to them, is a major challenge. Even when I am resting, I am constantly fighting the inner voices telling me to snap out of it and get moving. I am improving and will continue to try and find a balance, as the crash and burn is so taxing. I am not sure how to reconcile my ingrained ways with my new learned ways, but I am sure it can be done - some day!!! Glad to know that we are all in this together.
  23. I am sorry to hear of your pain, pregnancy is very challenging, especially at the end. I used to go crazy the last 10 weeks. I had lots of leg pain and did not know how to treat it. I would suggest a massage also. Would support hose help? Are you allowed anything homeopathic? I took drops to help with labour that were fantastic, so maybe there is something for your legs. It will all be worth it and your baby will be lucky to have a mum so committed. Hang in there!
  24. I love the spoon story. I sent it out to friends to help explain about how tired i feel. My husband says to me to make sure I have some spoons in reserve and it helps me to guard my energy.
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