putting on tons

[arvine]

well as many of you may recall, i started on 40 mg pred, last oct, am now down to 10mg since e 8, as per rheumatologist instr, for those many months, i seem to have controlled my weight fairly well, lots of water, lots of veggies, all the good stuff, off carbs, low sugar, salt etc, but the last few mos, seem to have gone awry, have had major stress throughout, which who doesn,t, family issues, money etc, grandaughter into drugs, my son and his wife have custody,etc, now, a nightmare, my oldest son, 48 yrs, has been diagnosed with multiple myeloma, on june 2oth, my late husband, his stepfather, was diagnosed with this in 1995 and passed in 1999, i can hardly breathe some times, thinking of what he has been through, and still will be going through, re treatment etc, although apparently have come a long way in med,s and research since then, still incurable at this point, he is strong, positive guy, with tons of supportive friends, and i am trying to remain strong and positve as well, i want to maintain my health to be there for him, its a struggle, i am having moments as you must all understand, and ha ving a hard time controlling my eating habits, my wetc, i think i am fighting, but up against some depression, at 10 mg of pred, can i still blame pred on weight gain, or is my emotional eating taking a toll, can anyone out there give me the straight goods on how i should be coping with this, i feel i,m losing control of body, if not mind, appreciate your input

[SheffieldJane]

My heart goes out to you Arvine. This is all much more than a body can stand. Comfort eating is understandable and 10 mgs of Pred will make you feel more hungry and make your weight gain more troublesome. I am so sorry about your eldest son's diagnosis, it must feel like the last straw! The best thing you can do in all this is to take good care of yourself and that means plenty of rest and the healthy eating you were managing before. No wonder you feel depressed , it is the powerlessness in all of this. I am glad to hear that your son is a strong positive guy with tons of supportive friends. You did something deeply right there. God Bless you! When you feel like you can't breathe you need to find somewhere peaceful and lie down, then quietly become aware of your breathing, in out, in out. Empty your mind of all your troubles and breathe slowly and deeply until the panic passes. Keep in touch.

[arvine in reply to SheffieldJane]

Thank you Sheffieldjane, i do try to get some down time, and do deep breathing, think i need some further help, am going to see what resources are available out there and look forward to some more positive feedback from members of this forum

[SheffieldJane in reply to arvine]

Someone to talk to ( apart from us) could be really useful right now. I have had counselling in times of need and it is great to off load on someone who is not emotionally involved. It also gives you more strategies to cope with what life throws at you and helps you to be the best you can be under the circumstances. Choose carefully, you may be with them for a long time.

[Rimmy]

Hello arvine

You really have been dealing with so many things which would be huge emotional challenges even if you were in 'perfect' health - you can hardly 'blame' yourself for something like weight gain. It seems very reasonable and understandable to me you would be seeking some relief and comfort in eating - that is VERY 'human' in these circumstances - and many of us would likely do the same. You are obviously well aware of what a 'good' diet is and when you feel less pressured I am sure you will get back on top of things. It may also assist you to get some professional support if that is something you feel might work for you. In the meantime and in the midst of everyone else's needs you must find some time for YOU - for yourself to regroup, rest and recuperate.

I am sure members of this great forum will very soon be sending many positive and encouraging thoughts and ideas your way.

Best wishes to you and your family

Rimmy

[arvine in reply to Rimmy]

thank you Rimmy, look forward to some more positive advice, and may seek out some professional help, to cope

[Slowdown]

It's as though we feel our child's pain in our own bones when they are suffering, added to PMR and the stress of other family issues it's a burden very hard to bear, no wonder you have come to rather a dark place, Arvine. We go on 'coping' for so long with strong minds, treating our bodies with care, taking time for rest, all the time presenting an 'I'm fine' front to the family not to add to their own worries.. your son's diagnosis must have been devastating, the tipping point where you just want to shout 'NO more'. But go on we must, somehow - I know you will have many very sympathetic replies and that's a beginning, hopefully a psychological boost for you to feel our compassion and understanding, we're 'with you' in spirit, taking deep breaths for you, willing you to find that extra strength of mind and body to cope yet again. We may also be peeking over your shoulder making discouraging sounds as you open your fridge door for a little extra something to eat!! That sounds a bit spooky, but hope you'll take it in the way it's meant!

I think your instinct is spot on, you may find comfort in seeking professional help, unburdening yourself could be very cathartic and you will be taking positive steps towards helping yourself. Wishing you the very best of luck.

[Judy211]

Hello Arvine. Doesn't life throw some stuff at us sometimes? Your post resonates so strongly with me...I, too, went through a period not so long ago when a series of blows knocked me down, one after another, and I eventually felt I just did not have the strength to get back up again. I got panicky, my heart started doing odd things, I was tearful, became a little withdrawn and began to isolate myself. Eventually I began to rationalise and to realise that certain things were outside of my control and gradually I came out of the tunnel, saddened but surviving.

You are reaching out at your time in need which is incredibly positive and absolutely the right thing to do. Take whatever help you can get and keep talking...let your friends support you too. My father died of multiple myeloma, also in 1999. Medical progress has been made since then and I hope with all my heart your son responds well to treatment. Re your granddaughter, many years ago I had an absolute nightmare with my daughter...I don't think I could find the right words to tell you about the mess she got into and the mess I was as a result...but things pass and she is happily married now and just an amazing person. So don't give up hope!

As for diet, that's a difficult one. I am really diet conscious and even more since my diagnosis with GCA in March because I honestly believe diet is probably the best intervention there is. Trouble is, when life is spiralling out of control, the easiest and quickest thing to do when you're hungry is just grab for the nearest thing. As you know, eating well takes time and planning. Try and make the time and you will feel better in yourself. I try to walk every day because it lightens my mood and I try to focus on nature and anything else...just not my problems! I highly recommend it.

Hang on in there, Arvine. Sending you a big hug.

Judy

[Jackoh]

Hi Arvine,

I think we all want to offer you support and encouragement at this time and as many have said a lot of us have been in very difficult places for various reasons and understand in part the turmoil, stress, uncertainty and fear that these situations bring.

Like others have said you first of all have voiced your concerns and worries and shared some of your feelings and that is a great first step, nothing worse than soldiering on and just putting on a good front whilst crumbling inside.

Again as others have said, try to develop a good support group of friends that you can hang out with. Perhaps consider a professional counsellor that you can unburden with, without feeling that you are burdening friends and family unnecessarily. The idea of a walk each day is really good because that lifts your mood. Looking after yourself too is really important because that is something positive that you can do. So you've fallen off the wagon re eating but you can still get back on and that will ultimately make you feel so much better. So understandable though that this was one of the first things to go.

Take one day at a time , don't try to work things out and let your imagination take over, over what could happen, that will only add to your stress.

Is there a local PMR group too that meets that you can join and again that would be a source of encouragement and support.

We all send our very best wishes and virtual hugs and look forward to hearing your progress.Xx Jackie

[PMRpro Ambassador]

I have nothing to add to what the others have already said so I will address this comment of yours: "can i still blame pred on weight gain, or is my emotional eating taking a toll"

Whether it is pred or comfort eating that is making you eat more than you should there is only one way to deal with it and that is taking control of what goes in your mouth. Even when it is pred that contributes to the weight gain it CAN be helped by being really strict.

You should seek professional help - starting with your GP I think.

I know it is hard - you have a mountain in front of you but as others have said, medicine has moved on in the last 20 years. I too had what one can only describe as an "interesting" experience with my daughter - now in her mid-30s she is a very different person. Miracles do happen.

[Trixiechamp]

Sending you hugs, my message isn't about your PMR as I'm very early in my own diagnosis and there are much more experienced people here that will give you fabulous advice. I wanted to reassure you re MM, my very good friend was diagnosed 14 years ago at age 33 with multiple myeloma and he was initially given 18 months prognosis...he is still going strong so yes they have come a long way. He is on Revlimid amongst others and they reckon it will be classed as a chronic condition rather than terminal soon. So don't give up hope. He also takes tumeric (golden paste) and cannibis oil for pain as he has neuropathy in his feet which helps. He and his wife have become the experts in managing his disease and make sure they question everything they feel is not right. It has served them well x x good luck and sending you love and hugs, you have such a lot going on 🌺 💐

[arvine]

oh trixiechamp, there is so much information we have been given, he started chemo last week, and had 5 radiation treatments before that, consecutive days, he is 48, he has to have a chemo treatment once a week, which is an injection, and is on steroids of course, also, is going to have bone strengthening therapy every 4 weeks, then after 16 weeks, they are talking a bone marrow transplant, can i ask if your husband had that done, my son has very positive attitude, the lesions were found on his spine about 3-4, no other symptons other than terrible pain before treatment, in mid back, all other organs fine, blood levels, kidney etc, all normal, grasping at all positive feedback i can get, thank you

[Trixiechamp in reply to arvine]

Hi Arvine, it's not my husband but a close friend, I'll ask him and get back to you. I know he has had two bone marrow transplants, the last one a few years ago. His originally started with a pain in his shoulder that didn't go, he was diagnosed after the Physio referred him for a scan. I can't remember the exact sequence of events but I know he has been on steroids, the Rivlimid, Velcade and also Thalidomide? I will find out as much as I can for you, he has periods where it is stable and under control and then has more treatment when it is not, usually identified by the blood tests and his general health. I believe there is a Myeloma forum on Health Unlocked and I'm sure you have already looked but myeloma.org.uk has some good information x x

[arvine in reply to Trixiechamp]

thanks so much Trixie, appreciate anything you can find out, where do you live

[Hindags]

Please try to think of yourself too in all of this. Almost any kind of mind/body practice might help as well.

As for cravings, I've found that to be a slippery slope. Once I slip, the cravings get much worse. But afterwards, I feel physically worse. I've tried to think of the grains and sugar I love as poison to my body now. I actually think they are. It helps to resist.

But with all the stress and worry you have, I can certainly understand the pull to those things that even temporarily drive those feelings away.

Powerful wishes for you and your son.

[arvine in reply to Hindags]

thanks so much Hindags

[christine2715]

I can empathise with all you say. I found the NHS does Wellbeing counselling free in our area. A lovely lady came to my house for 5 sessions and it helped a lot. I am in the South East. Also I went on a Christian retreat to a lovely Country house for a week for only £236 including all meals - it was a wonderful peaceful place set in the most beautiful grounds and again a complete rest away helped me a lot. You dont have to join in with the prayer sessions. Doesnt last forever but helps. My best wishes and a hug.

[arvine in reply to christine2715]

thank you christine2715

[Trixiechamp]

We are in Berks but my friend has treatment at the Royal Marsden and people travel from all over the country. Do you know if your son is having his own bone marrow or will he have a donor?

[arvine in reply to Trixiechamp]

he is having his own bone marrow we have been told so far

[arvine in reply to Trixiechamp]

my son had stem cell transplant in kingston ontario, last january, he is managing ok, on maintenance, Revlamid, seems to be managing, still some nausea, and fatigue, but overall pretty good,

[KinnearD]

Hi Arvine. I'm new to the PMR community however what is going on in your life is bigger than the illness. So much that you have little control over. If I may offer an observation that has been helpful to me. When life throws lots our way we tend to lump both the controllable and the uncontrollable into the same pile. Faced with just PMR, the controllable issue is nutrition and I find it reassuring to ground myself by coming back to careful planning of my diet. I use my fitness pal to record what I eat. Yup....it seems a measly action but it is possibly the one area we get control over. Good luck.

[arvine in reply to KinnearD]

thank you KinnearD, i am hanging in, my pmr is least of my concerns right now, with my son,s diagnosis, and other family, other son, family in crisis, just trying to hold on, one day at a time,

[GerriMc]

You are amazing. I don’t know how anyone could deal with all of that. So sorry about your son too. I hope you get the support you need. About the weight, I know you want to get it under control, but don’t be too hard on yourself. Sending you lots of good wishes!

[arvine in reply to GerriMc]

thank you Gerri, i am hanging on, thanks for your wishes, appreciate

[Rosedail]

Oh dear. I feel for you and send wishes for peace and healing to you and your family.

Please remember to take a bit of time to introduce small rituals into your day, to subsidize or replace a few mindless eating rituals, and that offer you some sort of personal relief. These are very tiny actions,seemingly silly or self indulgent or insignificant in the face of grief and enormous problems. But over time they have the power to bring you just enough peace to be able to breath again and the ability over the long haul to care for yourself, adapt and be there for others when it’s critical. For some this is 20 minutes of meditation in the morning. For others it is keeping a gratefulness journal where you write a list of 5 things you are grateful for before going to sleep. For others it is making time for a cup of perfect tea in the afternoon sitting in view of a garden and taking time to breath deeply and relax one’s shoulders. Or calling a friend and having a chat. Or, if you are going to eat something a bit sinful, then take time to make it special, pay attention and enjoy every last bite!

For me, I journeyed back in time in my mind and relied on the advice of a childhood teacher from Sweden who taught creative movement. She was a bit wild but also now I know quite wise. She taught us to take a few minutes after leaping about in class to thank our body parts for their service to us. So, for instance, we thanked our eyes for our sight and our feet for carrying us all day and our legs for allowing us to run. Of course I can no longer jump and leap as I did when I was eight years old. But now more than ever I appreciate my body for how it serves me and I so appreciate what Mrs Brooks taught me. I strive to actively forgive my body for its seeming betrayal to me, and voice praise it for its service to me each morning when I do a bit of stretching and breathing.

Best wishes to you during these times. And please pay mind to someone else’s post that if you need help, by all means go get it. If there was ever a time, now is it.

[arvine in reply to Rosedail]

thank you so much for your thoughtful advice, appreciate very much,

[Rosedail in reply to arvine]

I just saw that the original post was from a year ago...so I truly hope that you are doing better and that your son is responding to treatment!