I'm new but already can see this is a community of heroes with many different resources to draw on. Wondering what works for you mentally and physically?
What helps mind/body when you are hav... - Hughes Syndrome A...
What helps mind/body when you are having a bad day?
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aussiesue
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For me thinking positively, thanking the greater good for not making my loved ones sick, but me instead, I couldn't bare to see my loved ones suffer, knowing there are people on this site and around the world far worse off than me. I also meditate and look for all the good in my life, I have two lovely sons, 3 beautiful grandchildren and you know what else, I can smile each and every day 
Keep well, warm smiles to you
Lesley
Hi, I always try to remember there is someone always worse of than yourself..........
I put my anger, pain, & frustration into things like....the gym I go to where I feel it helps me cope with joint pains & the mind, my art & photography, listening to my music always helps me too....my music isn't most peoples cup of tea! but it helps me!! ( Metallica, Disturbed, Black Veil Brides etc!) to me it's very alive music, keeps me going!
I also put it into me raising awareness to help others in the future....
Keep smiling xx
Move! Take a walk, work on something that requires you to be physical. Good for mind and body.
Animals! My dogs seem to understand especially my little Shih Tzu who will just come and sit beside me sensing that sitting on my lap might be too much on that particular occasion.
There is something very comforting and stress relieving about stroking a dog or cat. They also force you to get up and look after them when you would rather just get under the duvet!
I can relate to that! that is something else that keeps me going...my boys are grown up now, so they dont need me as much now, but the pets in my care do ....... & I have to get about, feed, clean etc them all out wether I feel like it or not as they rely on me.......& I love them
I put make up on. Lol sounds silly but looking better makes me feel better. Pretending nothing is wrong is easier than people sayin 'You look tired!' or 'are you sick' I also remind myself that it could be much worse & there are many people that are worse off than me.
Mind over matter I guess.
Mentally...I get down pretty fast when I am not well. I read and research more about APS and our world around APS. It helps me feel somewhat empowered. Writing is also a good outlet. Journal what is going on and how you are feeling. It helps.
Emotionally...I try to get through each day when I dont feel good...taking it one day at a time. I have strung all these day together this go around and I am at day 52. A good cry is needed for me every once in a while too. I keep reminding myself that although I am in a bad place at the moment...it could be worse and there are others who are worse off than I am.
Physically...Normally when I am functioning ok...I would take a walk...get fresh air and make sure I take really deep breaths. Now...that I cannot walk right or balance...I dont do much physically. Small accomplishments make me happy on days like this.
I agree with Hughes Patient too....my dog is like my third child. She also knows when I am not good. She will come up next to me and put her head down on my leg or lap. She is with me here all the time...kids are coming and going. (and she doesnt talk back..lol!)
in reply to pumpkincake
My balance used to be so bad that would use the walls for stability, stumble frequently, walk with my right side going first, and I even fell down the stairs once. I cannot emphasize enough the importance of moving. Try to walk using the walls for balance. Walking in the grass is GREAT for balance development. Repetition is key. I now walk 3 miles a day and feel SOOO much better, both physically and mentally when I do. Force yourself to walk even when you feel bad. Baby steps lead to big steps.
pumpkincake in reply to
Hi Jim
I use a walker right now..have for about 6 weeks or so. I push myself to do alot..have fallen 6 or 7 times when forcing myself to push through. I have a balance problem and it feels as if the floor sometimes comes out from underneath me or as if I am getting knocked over.
Thanks for the encouragment... I am not one to give up or give in, so this is a fight!!!
in reply to pumpkincake
My balance suffers when my INR is less than 3 and is best when above 3.5.
pumpkincake in reply to
My doc wont allow me above 3...and it is causing me alot of problems. I am trying to get stabilized on lovenox but have not been able to get them yet. Doc says I am in "coumadin failure".
Do you have other symptoms when you get the inbalance?
in reply to pumpkincake
I am more lethargic and have more metal confusion. Lovenox works almost immediately and you should be seeing the benefits if it is the correct dosage. Do you also take aspirin? IMO, that is more important than warfarin. Drinking lots of water will also improve blood flow to the brain and other organs. Fish oil and other foods will also thin the blood and will not be reflected on the INR.
Wittycjt in reply to
I realize this is an old post. This is so true.
Can i ask what else you’ve done to help your balance?
Hi, This post is so old and the member has now left - Im switching the conversation off - I suggest you post your own question?
MaryFAdministrator
Hello, well for me, i was lucky enough to be born half cup full... i try very hard to keep positive and take positive actions. I always make sure I get plenty of day light, even the winter sun, I move as much as possible, i also tyr and do things which are funny, laughter helps to the oxygen in the body and also relieves pain. At times I am very compromised, sometimes almost fully deaf and left with perhaps one finger tip to type. I research a lot and share information... and keep in touch with friends and contacts as much as possible by any way I can. I am lucky to have a lovely family... and a few good friends... and other who i see when I can. MF x
I wanted to add this too. When I have had a long spell of problems with my health I will make a "me" day. I have gotten a pedicure one time, my hair done another, a little shopping therapy or just a relaxing time doing what I want. I think we dont get the chance to allow ourselves to destress enough.
I have a nice hot bath. When I do body scans and meditation they really help. I was reminded recently that I should really listen to my body and what it is telling me it needs. Like Mary, I try to be cup half full mentally and do well on that front. But I'm crap at moving when I'm really stiff and sore, can only manage a short gentle walk. Not great atm with diet either so feel inspired by these comments. Think what helps me too is to find the balance between being aware/ observant about these medical conditions and what's going on, while still making 'live my life' forefront, making sure I don't get too obsessed and bogged down. Hard to find that fine line.
Oh and I meant to say re listening to my body that I get best results when I just sit and don't let my thinking take over. I reckon a lot of us including me are often 'cut off' from our bodies and our conscious thinking doesn't always know what's best. I think our minds and our bodies are intricately connected, not separate. I guess for me its about working towards having a kindly awareness, making sure my inner critique doesn't get in the way. I just need to walk the walk, lol! S x
I have been prescribed mild anti depressants and find they work great. And if I don't feel well I try to "pamper" myself...take it easy...read...love my 2 Maltese angels ....watch tv....etc worrying is the worst oh....almost forgot...I try to remember to feel GRATITUDE....at 63 I can live with APS.(chronic)...I know of so many other people w/ more life threatening illnesses
aussiesue in reply to
well said Luisa, I second that
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