So you know my post a couple of posts ago where I was really positive and was not letting this disease beat me.
I have now moved into the angry and peeved stage :o)
On a Tuesday at the moment I start work early and finish at lunch time so that Mark can then start at 1:00. It means I get to take Riley to swimming, but it also means that I am on my own in the afternoon, which in the normal world is fine. But when your in Lupus world and suddenly find you are running on empty really sucks!!
I had been on steroids for the past few weeks to help with my energy while the medication I am on kicks in, but I have come off that now and am not overly keen on going back on it. The side effects are awful, most noticebly the fact that I turned into a bit of a cow!! (sorry family!) But it also means I have gone flat again. And its ticking me off. I want to do so much. I want to scrapbook, I want to play Hockey with Riley outside, I want to do the vacumming.
And basically I can't. Simply do not have the oomph. Pisses me off!! And how do you explain to your nearly 5 year old that you can't play with him?
I'm hoping this angry stage will soon pass. I'm hoping venting on here will get it out a bit, so bear with me while I get past this stage and hopefully move into the next stage (please let it be the medication's kicking in and I'm feeling better stage) :o)
In the mean time if you are waiting for something from me, or anything can you please remind me, cos the other thing is my memory seems to have fallen out of my head and whereas before I used to be quite an organised multi tasking sort of person, I am now a forgetful, can only do one thing at a time kind of person!
Lupus Sucks!!!!
Thanks for listening :o)
About Me
- Megan
- I'm a part time working mum of two boys, Connor and Riley and wife to Mark. I spend my days working for a construction company, looking after my boys and scrapbooking if I have any energy left!
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15 comments:
Oh Megan, I'm so sorry!
PLEASE let me know if I can help out with anything, okay? I know I said I was busy, but hey, none of that matters when it comes to the health of a friend.
I'm sure that this angry stage will not last, but I do believe you NEED to go through it so you can move on. That sounds odd I know, but sometimes you just need to be angry and vent and let it all out, before the next stage comes (and of course I am hoping like you that the next stage is more positive and you will be on some decent meds).
(((HUGS)))
Sorry to hear things arent great at the moment,hope things gett better for you soon. And i agree with Hannah you need to go through the angry venting stage to move onto a hopefully happier place.((((HUGS))))
Yep it does suck Megan. But your a strong woman and you will get through this. I can recommend a brilliant naturopath if that's something you are thinking of considering - in terms of helping with side effects of medication etc. And he's in Brown's Bay, so not too far from you. Put it this way, I took Mum when she had breast cancer, and he told her, he can't cure cancer but he can suggest some things that would help with the side effects of treatment, which he did, and it sure did help - we know it helped because Mum coped well on rounds one and three of chemo with his help, and not good on round two...
oh megan ... it does suck! and i think it's a natural feeling ... being pissed at the disease. i know i have felt exactly that way ... mad as heck that i can't do the things that i have always done, not having the energy for playing with my girls, and mad that some disease can change my life just because it came to live in my body. it does suck and it's not fair. i think at some point ... you get to where you accept it more ... and realize that you have to learn to live with it and adjust your life. it's not easy ... i still havn't figured it all out. lol!
and yes, venting does help. lol! doesn't change anything ... but it does help to get it out and express your frustration. i can point you to MANY of my blog posts over the last 2 years where i vented about my health. lol!
and the memory thing ... that stinks too! lol! i was a brilliant multi-tasker and do-er of 134 things at once. now i have this great lack of focus thing going on ... and terribly forgetful. i'm still running like a mad-woman half the time (as fast as a chronic-pain-ridden-girl can run anyways. lol!) ... i just don't seem to accomplish much!
sending you hugs!!!
It really does suck being diagnosed with a disease - I know how you feel and went through the angry stage too. You'll get through it and learn to accept it as an unfortunate fact of life. Wish I could be more helpful! All I can say is you have a lot of support from a lot of awesome women out there who'll help you cope with it. :)
Oh wow ... yep that sucks all right ... hopefully your meds and whatever else you need to give you a boost, will do just that and quickly. Look after yourself buddy.
Thinking of you ... big hugs. Take care.
Vent away my friend you have every right to be pissed off you didn't ask for this .like Trace said give the naturpath a go and any help you need sing out we are all here to help.On the memory front I know that one all I can say is lists lol I cant get by without them man I can run round looking for my glasses and I am wearing them lol
Now thats MENOPAUSE for you.
big hugs Megan .
I agree with all above - vent away... not the same but when I had Glandular fever I remember sitting down (friday after work) in a chair and not getting out till the sunday night - No energy at all!!! and now and then I feel the signs so I know to slow down!!!! all I can say is VENT away - that's what we are here for. And as for Scrapbook..... let us know if we can do anything to help.... one idea I had was to use us all to come up with the Friday night challenges.... pick one of us... we make the challenge, we judge and announce - ta-dah job given away.... just an idea..... hugs for you and hope you getting sorted with all the meds asap
mandyb
Oh, Megan, I soooooooo understand. I too have an auto-immune disease, Graves Disease. I used to say to people 'at least it's not cancer' and just shrug it off. But the fact of the matter is I struggled going through it. It may not have been a death sentence but to me it felt like it might as well have been! I couldn't do anything, I was soooooooooo tired, my legs would give out walking up stairs, it was horrible! And now things are under control but I still don't like what I have to live with while being 'normal' either. And it still means meds for the rest of my life! Hang in there, buddy, the other side will be here soon ;)
bummed to hear your having a tough time right now- i've heard lupus can be a challenge to control and work out. i hope the meds kick in for you.
hang in there baby! you'll make it. i promise.
I'm so sorry Megan!! I hope this stage passes quickly :( Big hugs to you!!
Oh man Megan, I am sorry to hear you are struggling with Lupus. I hope this phase passes quickly for you! BIG HUGS
Megan, I found your blog on the Sketch Book blog and I am so happy that I did. I have MS and I don't sleep much so I like reading scrappy blogs for inspiration. I will be a daily reader of your blog.
I am sorry to hear about your Lupus. I can totally relate to wanting to play with your kids and not being able to. I have dealt with this for over 5 years. I promise that your kids will not hold it against you and they will be stronger people for living with you and your disease. In time you will find things that you can do together that do not take a ton of energy.
Keep blogging your feelings, I truly believe it helps to get your frustrations out and onto paper or a screen. Love your work and I will put you in my prayers.
Love and God bless,
Shaun
www.roomswithaview.typepad.com
Hey Megan
Sorry you're having to go through all this crap. It's not too pleasant when you feel like that.
Vent away all you need - I think the ability to verbalise in some form helps get those feelings of frustration and anger out there, making room to deal iwth the stuff you need to.
Easier said than done, but it's OK to let things slide while this is going down. I know you're family is there for you - and all of us too. Hang in there.
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