[Salopsally]

Im feeling generally rough and Im not sure why. Is it just the winter blues?
Is it Lupus fatigue? Or maybe its just laziness :sad:
I feel grey and under parr all the time since stopping the Prednisilone. Had a short burst of Pred over Christmas and for 6 days I felt great even though I had laryngitis and a cold and cough.

I feel like being a steroid abuser it makes me feel so much more my normal self. Im normally a very optimistic type and at the moment I feel depressed. Never let it be said though because I just dont want to be like that. I want to be my normal optimistic self.

I wouldnt of course abuse the steroids because I know you can pay a high price for that but I do like the lift they give me.

Im diagnosed with SLE and Fibromyalgia but never really know which symptoms are which.

My joints are currently not too bad but I have like a trapped nerve in my shoulder which drags me down and also bowel problems which Im still waiting for the follow up appointment from a Colonoscopy.

Still not started the Plaquinnel yet but got my appointment for the pre-medication talk tomorrow so suppose once I start that I will hopefully buck up a bit.

Struggling a bit finacially as well so I suppose that doesnt help my mood. Im a small business in the credit crunch and its becoming hard to survive. Cant even go and do any retail therapy. Although that doesnt even seem to appeal to me these days.

Suppose its just that wading through treacle kinda a feeling you get with Lupus fatigue. :sad:

Not sure why Im telling you but it often makes things better if you put them down in writing. Helps sort out your mind.

Actually Im feeling a little better now Ive written this and will now push through that treacle and get a bit of work done.

Im sure someone will tell me I need to get out and have a walk or do some exercise which I sort of feel I need but my legs and feet hurt when walking and my muscles and joints hurt when doing exercise. Im now having a hot flush.. because im on the menopause.. Oh joy lol.

I think I have the solution already. Im going to do a bit of housework.. have a shower.. get myself looking as lovely as I can then Im going to put my favourite music on and jig around a bit for a bit of easy exercise.

There see ... just putting it all down has given me a boost. Thanks for listening.

Hope you are all feeling a bit more upbeat than me today.

I hate being a whinger.

Luv and best wishes to you all.

Sal xx

 

[Katharine]

Hi Sal and ((((((((hugs))))))))

Yep, you get days like that. I think, as we've all said before it is clear you are undertreated for your illness and that just isn't going to go away by magic. I am horrified at how long it has taken for them to consider plaquenil and now for you to actually get to take the stuff.

Apart from that, I do know what you mean, we just get days like that and writing it down does help so much.

I am not quite feeling the credit crunch, more a late payer (one of hubby's clients) crunch and feel rather the same way as you. I'm in a slight blind panic this week about bills and when I went shopping now for bread and cheese suddenly realised with dread that my card might not work...this can not go on, it'll run me to an early grave!! So, yep, I was in a shopping centre the other day, fantastic reductions all round and I had to go round it like a blinkered colt who can't even look at the fillies (sorry, it's all horses with me :lol.

Anyways, I do know that, in our case, this is a temporary blip and we'll soon be back to our "just enough" state.

Let's hope that you're feeling better now and that you'll have a fabulous summer (work wise), maybe more people staying at home for the holidays will help. Maybe hubby and I will drop by and say hi (if his clients have paid by then - haha).

hugs :hug:
Katharine

 

[julsie]

Hi Sal,
You're not whinging...ok...well a bit,but who cares?we're all allowed to do that sometimes.I'm not surprised you're up and down ,you have so much going on.Some days I feel fine like you and then others very low.I don't know if it is to do with autoimmune stuff or our response to stressors,maybe it hits us harder,or just a combination of everything.You have illness,hormonal and financial stresses at the moment,I think that's enough to make anyone feel down I think you have the right idea,pampering yourself,and jigging to some music(I do that too,obviously when noone's around:blush:but it makes me feel better)maybe short bursts of pred are the answer?they are obviously putting something right that is wrong,if only temporarily.Be nice to yourself,Sal,and know that you are not alone in your downer's and hopefully they will pass soon,
much love,
Julsie

 

[Salopsally]

Hi Katharine,
Thanks for the reply. Im dragging myself out of it as we speak. Lifes far too short to be moping around.

Had the shower, put on the makeup and a friend has text to meet up for a drink and a chat tonight so thats perked me up.

Ooo hope your customer pays soon. I suppose Im one of those dragging their feet on paying the bills at the moment too as there just isnt enough money to go round.

Just had the door knock and the lad tells me the Laundry I use has burned down. Oh dear.. dont suppose they burned the record of my outstanding bill though. Bad news for them though so it proves things arnt so bad for me it could always be worse.

I know loads about horses now as Ive just watched the Horse Whisperer for the first time at the weekend. Im kidding.. I know nothing.. good film though.
Sad end. I hate love stories that dont end in them living happily ever after lol.
There must be a riding stables near hear as they go past my house everyday and I love watching them. The other week the horses and the riders where all dressed up for christmas they did look lovely. Im a bit frightened of them though.. they are sooo big. Suppose as ive never had anything to do with them.

Ive got your double en suite room ready so just give me a call when you get to England and Ill get the kettle on. :wink2:

Thanks for the chat I really do survive better with people. I hate these long days at home alone.

Now to get the rollers in my hair give it a boost for my night out. What do they call it.. a zzush.. I need a good zzush.. not sure how you spell that lol.

Sal xx

 

[Salopsally]

Hi Julsie,
Your post popped in while i was replying to Katharine. Thanks yeah I know Im not alone.
Its great to get a bit of support here though when I feel like Im going under a bit. Im feeling better already.
Hope I can help someone else perhaps with some friendship or encouraging words on another day.
Ive drawn the curtains just in case the neighbours think Im a mad woman bopping about with curlers in my hair. lol.
Sal xx

 

[julsie]

stick Duffy's 'begging you for mercy'on full blast and start bopping,I think it will do the trick!:lol:
Julsie

 

[LolaLola]

Hey Sal, Don't be so hard on yourself. I could not run the business you do. The small bit of work I do in my Son's business can all be done from bed with a phone and a laptop. I don't even have to get dressed if it is a bad day.
Like you I am not doing great at the moment, however I have the advantage of plenty of medication and being allowed to use my discretion with it.
I am afraid I still don't feel you are receiving very sympathetic care.
x Lola

 

[mary520]

Sal,

I wish you brighter days ahead. Hope you get to feeling better. I understand about the predisone boost. When I've been on it a few times in the past, it was the only time I felt normal in a very long time. I wish I had some now, as well.

Hope the plaquenil will improve your symptoms but it does take a while to see results. It helps my fatigue alot but it took about 6 months to see a difference. Hang in there.

Mary

 

[Salopsally]

Thanks for your replies. xx
Had appointment for starting Plaquenil today. She didnt tell me anything I didnt know but she was very nice.
Im starting tomorrow.
I hope it does help with the fatigue coz Im fed up with feeling like a 90 year old.
Went to town today. My walking is terrible. My feet hurt.. my knees hurt. My stamina is zilch. Couple of bags of shopping from Azda and thats me back at home for a sleep. Glad I have a fit and strong daughter that helped.
Thankyou anyway for being there when i needed a bit of support.
Luv ya all.
Sal xx

 

[onetay]

Sal,
I know just what you are saying if the steriods were not so risky to take long term they might be the answer for all of us will at least sle lol. I hope that the plaqs works as well for you as did for me. I had a little more energy on it and hope by this time next month to be back on it too. If you are feeling a little depressed maybe a mild anti would help in the mean time to get you back on track. I am however sure that it is not laziness as I have not met anyone in here that is lazy yet. Many would like to think that we are but it just is not true. Would like to ad it could take up to 6 months to feel the full affect of the plaqs so give yourself time to get it in your body. Keep smiling and trying to be positive.
Tammy

 

[Salopsally]

Thanks xx
First day of the Plaquinnel today. Just 5 months 29 days to go then
Feeling a bit brighter though now so thanks for all your support.

Sal xx

 

[macfamily53]

Hi Sal

I was reading your post and thinking how much it sounds like my life lately to.I am soory things are not going so well for you in the finance part and sure hope they get you on something for the fatigue also((((hugs)))).You are far from whining also .One thing i have for sure learned about this stupid disease is if we get stressed it is not good for us at all.I just love it when people tell me not to stress out about things lol.I just really want to laugh because i do know as any other lupie knows it is not possible completly anyway.My hubby has been layed off or the last 5 weeks and looking like it might be a very long time before he goes back to.So i do know what it is like to have finamcial stress to and i think these days no matter where you are people are having a lot of finacial stress also.I sure hope with your new meds you are able to get feeling much better and get rid of the fatigue also((((hugs))))

Tammy

 

[confused1]

I'd like to give you a thoughtful answer, but I don't have the energy. The possibility of laziness as a reason for my exhaustion crossed my mind the other day, but it was just to tiring to entertain the thought. I think you are experiencing life without steroids. I went off prednisone in October. I've been sick since. And it just keeps getting worse.

So, permission granted for whining. Matter of fact -- I'll probably join you. We can whine in harmony. And I think a nap is in order. A long nap, followed by a leisurely shower, but only if it feels good.

Seriously girl, you've got nothing to feel bad about. And all that jig stuff, if you can really do that then you're doing better than I am. So far today I've read a little bit on the computer and taken a long nap. I ate two desserts and now it's time for bed. I hope your doctor will get you onto some long term meds that will get you feeling better soon.

Sunny