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I'm sorry to write another 'poor bloody me' post. I'm not actually looking for sympathy, feeling beyond desperate. I try to look on the brightside and put on a brave face but i really can't do it anymore.
I've been on steroids (pred) since Nov, and have got down to a low dose, but had a massive steroid injection last week into my back, which has helped me to walk. I was already suffering from a puffy/fluid face but it's got so bad. I want to curl up and just cry. I know it will go away and there isn't really anything anyone can say to help/,make me feel better. I've got moonface, there is SO much fluid in my face and it actually really hurts and aches. My parents both work all week and are out the house from 8 - 7, although when i couldn't care for myself my mum worked half days. She is now back full time, and i'm just on my own all day with my thoughts. I try to be productive but it's just unbearable. i don't want to see any freinds, because i feel so horrible and they don't really understand. I'm quite private (think i'm only saying this to get it off my chest and i don't know any of you so it's quite anon) and can't help but put on an act (subconsciously) brave face when i'm around peope, i can only be myself around my parents. My mum is very supportive but there's not much she can do, and as much as i want and need her to be at home, she has to work for money etc.
So i live for the weekends when they're at home.
i just feel i can't carry on like this ( but i have to). My whole life is just suffering on my own, looking on here, trying to eat well, and endless hospital appointments and taking meds every 4 hours. I'm 21 and am just totally desperate and fed up.
sorry for writing this and i don't even want sympathy because i'm so lucky in so many ways and i'm so grateful for that. there a so many people worse off than me.
is there anyone else on the steroids - suffering?
I've just finished a course of Methyl Prednisolone. I had to take my course because I have Multiple Sclerosis and have had a relapse. MS can be really scary, but what got me through the early days (I was 22 when I was diagnosed) was getting in touch with the local MS Society, who ran social and information events for young people. I made some really good friends that way - people who really understood what it was like being me. I don't know why you have had to take steroids for so long, but is there a support group for your condition that you could get in touch with or be referred to? Could the hospital help with this?
When I started going to the MS Society group and realised that my symptoms weren't so different to everyone elses, it really opened up the world to me. I started getting out more (even though I needed physical assistance), fundraising and volunteering for them. It really gave me a sense of purpose. I think the internet is a great way to connect with people but nothing beats actually getting out there in the world.
Maybe you should give your friends a chance too? I realise that you feel self conscious (I know what the moonface is like, and the acne and the weight gain and the facial hair...) but if they're true friends they'll see past that. I shouldn't imagine you would turn your back on a close friend because they had an illness. The thing is, if you leave it too long, they might give up and move on. Don't let that happen! Why don't you just give your friends a call?
I think a big part of the living the Kind Life is being kind to yourself too and it would be much easier with people around to support you to do this. I know it isn't easy to feel positive when you feel so ill, but if you let someone in, they can help your positivity to grow.
Take care, love Danielle x
Hi Helly, I can sympathize. I've been on that drug and its not fun. I've been living with chronic pain since my spine surgery 10 years ago. I struggle to sit, walk and stand. I understand the isolation, its hard for me to perform most normal functions, all those little things I used to take for granted. I too but on a brave face, but at home I show my true feelings only to my husband. I am sick of the hospitals and doctors too, but I try and stay positive.
It does help to stay on a healthy, nonflammatory diet. I think if it were not for that I would feel worse.
Like Danielle wrote, maybe reach out to friends or a support group? You are not alone in your feelings.
I wish you the best, Diane
Hello and you have my deepest empathy. I was on steroids off and on for 20 years. I noticed the emotional response my body seemed to have. On the lower dosage maintenance I actually started having symptoms of depression. I found a specialist who was willing to help me find an alternate therapy. I realized that doctors ahve varied opinions on the medication used to treat medical issues. Predinisone is also hard on your body......however there are instances where it is the only choice. Is a pain pump or TENS unit an option for you?
I will pray and carry positive thoughts for you.
I too can empathize w/you. I was on them for two years! I have 14 herniated discs, and severe arthritis in my low back and horrible allergies. The drug makes you puffy, no doubt. I went from 110 lbs to 240 lbs. My doctor said, you can look skinny and die (couldn't breathe due to allergies) or you can be big and live, then eventually lose the weight. Well, I'm still struggling to lose the weight. I just purchased A.S. diet book and can't wait to read it. I started w/easy yoga and do it at home, I eat MUCH better now, do deep breathing, pray/meditate and I know everything will be okay. My face JUST started getting less puffy, and I think that is due to not eating meat anymore or dairy or both, not sure. You are young and resilient, you will be okay. Think healthy and positive and keep staying in touch w/us, or a support group like us. Read positive things. And do know, your friends WILL understand, you do NOT have to hide. You are not alone, you are special and need some positive reinforcement. Go out for a walk and look at nature and just ponder. Much Aloha to you from all of us.
thank you all so much for your kind words, it really means a lot. xx
Helly, your post was very compelling. I am sorry for your health troubles and your pain and suffering. Those medicines are often life saving but can also really mess up your emotional balance.
A nurse I was treating once called prednisone "The miracle drug from the gates of hell" Even slowly lowering the dose or going off it can cause profound symptoms of suffering.
Human beings are social creatures. That's why we are all here. We need to communicate with others to process how we feel. You simply cannot just shut yourself in all week every week. It doesn't help your recovery.
Would you consider trying acupuncture for your chronic pain? It might be helpful. When it does work, which is not always, it does so quickly and dramatically so you only need try it a few times to see. It is usually inexpensive compared to regular medical intervention.
For chronic debilitating auto immune disease like RA or MS, I strongly advocate for a completely vegan diet. The complete avoidance of all forms of animal foods and especially dairy protein is essential. Several of our most common and destructive auto immune processes are initiated by contact with dietary factors. Those factors are found in animal foods.
Check out PCRM.
Thanks Justin - So true.
( I will respond - just wrote a massive insert and silly computer went wrong and now it's gone. Will re-write soon!)
I am on prednisone now and it's terrible, i know! It's been called a
"necessary evil" as a drug because it calms inflammation in your body but wreaks havoc with the rest of you. I was on 60 mg and am slowly weaning down. You MUST put on a brave face and smile through this, puffy cheeks and all (mine are puffy now too). You are the same person you were before you had to start taking this, you won't be on it forever (or hopefully even much longer), and the best way to deal with it is to accept that there is nothing you can do about the side effects, but recognize that there are definite and severe side effects. One of the most prominent ones is that it wrecks your head and all your emotions are topsy-turvy. Plus, uh, the terrible anxiety and propensity for panic attacks. :)
Here are my suggestions for what I do to deal with the puffy adorable chipmunk cheeks:
* I cut back on as much salt as humanly possible. Check everything for sodium and eat as many whole foods as possible (if you are here you are probably already doing some of that)
* drink a ton of water, slowly, throughout the day. I have read that our bodies can't absorb more than like 12 oz in an hour (an unverified statistic) but try to sip a lot of pure water all day long.
* After I workout or do yoga, I have been trying to sit in the steam room for at least 20 min at my gym. If you have a gym or access to a steam room, I would recommend it.
* this should have been number one but STAY AWAY FROM SUGAR. Seriously, cut out all sugar and if you need something sweet try to eat fruit or something natural. I am somewhat of a sugar addict and it's terrrible - I eat vegan chocolate but some of it still has sugar in it and I can definitely tell. Not only will it not help your body but if you are anything like me it will make you eat everything in your cupboards.
Thanks for all the responses. I'm really trying to stay positive. i haven't been well for a few years and i'm just a bit fed up of having to be stuck with a rubbish 'life routine'.
i've just started cranial-scaral osteopathy (excuse spelling errors!). I've only had one session and have another one next week.
I'm seeing a counsellor/healer tomorrow, which i think will be good.
I think i am a bit low/depressed and it doesn't suprise me, all the medication is bound to make one a bit all over the place.
I'm off the morphine today, experiencing withdrawal still but still determind to come off it.
my weight is bothering me a bit, i've put on half a stone. i had lost as stone and a half, and felt very happy and very comfortable with food (i used to obsess and be unhappy about carrying a few extra pounds) but now i feel miserable and i'm trying hard to not put more on and hopfeully lose it.
I've started swimming 3 times a week and doing a bit of toning. I went for a walk today.
Thank you for the tips Violet, i have heard that about salt, wish i'd heard it earlier but never too late to start something. I do try and avoid sugar, yes exactly the same once i have sugar the binge comes out!
I know pred can encourage weight gain (increase apetite), but i feel that the morphine was just keeping my apetite very reduced and i'm worried i'm just going to go back t how i was. I've changed my diet to vegan, though so was hoping it would stay level. I'm trying not to snack inbetween meals. I wish it wasn't so important to me, but i'm so much happier when the weight comes off, ideally i'd like to lose a stone and a half from where i am now.
i just want to stop feeling so miserable! I know it'll get better!x