[Peapods]

Hi
Am new here but not new to Lupus. Have had it 25 years now with all the 'add-ons' as well. Am 61 now and was hoping by now it would be more manageable. But am still plaqued by fatigue and depression. Of course it is great not having all the pain and flares and Doc says the lupus is not active but no matter how many ways I try - resting a lot, eating well, gentle excercise , blah, blah .... it still catches me out.

Still cant make plans cos dont know how I will feel. And as soon as I feel well enough to do any kind of socializing I knocks me for six.

For example - had a good few days last week and managed to get a few things done in my new home (that I moved into in November) was actually getting some good nights sleep and felt 'OK' then looked after my 3 year old grandson for a day on Sat (which was mainly playing 'cars' on the floor, taking him to hairdressers and watching dvds - nothing too strenuous) and woke up Sunday feeling yeuk again with no energy at all. Couldnt even get dresssed all day, Monday not much better but did manage a bath and getting dressed, today (Tuesday) a tiny bit better - managed a shower and dressed by 11.30 but not sure if have energy to walk to shop but running out of food so will have to. So it will probably be another couple of days of doing very little and feeling bad till I recover enough. That will be nearly a week! How are you sposed to cope like this? When I was younger I was able to 'push through' the pain and fatigue till I crashed and then got up and started again but now its seems harder and I dont have the same reserves.

I live alone so have no assistance (not that I would want it because when I feel bad I dont want to see or talk to anyone anyway!) My family are great and very supportive although dont live that close.

And so it goes on! Does anyone else have the same thing at this age - without so much pain etc but unbearable fatigue and depression?

(Just ordered a tee shirt from the States that says 'Lupus Sucks' - probably wont wear it but it made me feel better to buy it!)

Any feedback would be appreciated

 

[Meryl2]

Hi
Welcome to the Boards, sorry to hear you are not too good.
I will be 60 in October, but I have only been dx with SLE for 2 years and a few other things to go with it, still trying to get my head around it.
I work during the week, but sometimes wonder how I manage to get myself out of bed. My Son and his wife separated just over 12 months ago and he has custody of his little boy, so of course with him working it is sometimes left to me to get my Grandson to School and pick him up again after school, I am finding this very difficult as well as working and I find that come week-end I am fit for nothing and spend all week-end in my night clothes. I really want to help as much as I can, but I am beginning to realise that there is only so much you can do.
You will get a lot of support from this site, I am glad I joined, it has helped me a lot.
Please could you let me know where you got your T-shirt from, I would love one like that.

Hope to speak to you again soon, take care.

Best wishes
Love
Meryl

 

[Clare.T]

Welcome to the forum !

I am almost the oldest here nearly 65 and diagnosed about 36 years ago. I wasn't badly affected relatively speaking. I am appalled how weary I feel these days compared with what I expected but I can't honestly say how much is due to lupus per se or stress after stress over the past decade, not to mention not looking after myself as well as I should. Our grandaughter is eight and no trouble but I am done in after an overnight.
It would be well worth making sure you aren't suffering from thyroid or B12 deficiency. I was almost hoping I did have pernicious anemia which my dad had, because I know a few injections would make a huge difference.
I don;t see any reason why everything shouldn't be done to help you feel better whether your lupus is supposed to be in remission or not.
Lately I have been deprived of a very important medicine in my cocktail and I am sure being without it is making a big difference considering that when I started taking it, it made the biggest difference to my lupus. Of course I am getting very very irritated, stressed and depressed about not being able to get it which doesn't help anything of course
So if you have been taken off meds ask if you can start on Plaquenil again just to see if it makes a difference. The medicine I am talking about is called Quinacrine in the USA, Mepacrine iin the UK. It is very energising especially when used along with the Plaquenil or chloroquine.
It is acknowledged these days that depression can be caused by lupus itself, as well as more obviously a reaction to living with a chronic illness.
It is also known although less often spoken of that getting old and weaker is not always the happy time that is presented to us by the media.
All these senior citizens rushing around having the time of their lives is so much codswallop in my jaundiced opinion.:lol: I sometimes feel overwhelmed by losses. Luckily I am quite a resilient person with plenty of interests and I so hate feeling miserable that I can jolly myself out of it, but I am seriously thinking of getting on an antidepressant again. That's what they are there for and one might as well enjoy oneself as much as possible and make life as kind as can be.

I hope maybe I have been of some help if only so you know you are not the only one. Many more people of our age would tell you the same if they were honest enough and dared to if they were given permission by society to talk about it.

Many hugs
Clare

 

[Peapods]

Over 60

Thanks for the replies - they were both helpful. It seems like when you reach this fabulous age Lupus is a whole different ballgame - but still sucks!
Because there are so many other physical and emotional issues that get tangled in with the Lupus that you dont know what you are feeling or why you are feeling it!
I guess its still a matter of trying to balance what you want to do with what you are able to do.
I actually do have a rocking chair (bought on Ebay for £10 and my pride and joy!!) and I have a cat and I enjoy knitting but am not ready for that as a lifestyle yet!!
I still get very angry when I feel my energy draining away after doing the simplest thing so maybe I need to work on my attitude to Lupus. Cos being angry takes valuable energy.
I do take Plaquenil and the doc has increased back up to 2 per day, and take 2 fluoxetine per day. Do also have a thyroid problem but not severe enough to make any difference - have regular checks. Like Clare I have had more than my share of trauma and stress since getting Lupus, although, Praise God, things are relatively peaceful right now!
Think maybe I will cut back on having my little man to stay over quite as often and concentrate on just getting into a routine in my new home. Also have been referred to a psychotherapist and hope chatting to her will also help as the line between the physical and the mental/emotional is so fine as i am sure you all know all too well!!
Dont know if people read these replies but even if not - it is good to just get it down in print!
Love to all
Andi xx

 

[Joandublin]

Hi Andi

Nice to meet you Im 51 this year so I'm not the oldest here but I'm not too far behind either

The biggest problem I have with my Lupus is the fatigue. No matter what I do it always seems to come back to bite me. I know that I do too much and Im making plans at the moment to take back control of the situation and lower things down a gear or two. I'm hoping to get the balance right between resting, working and enjoying life. If I crack it I will let you know!

The thing that upsets me the most are those days when I know, as soon as I wake, that my energy is low. No matter what I do, I can't reclaim any energy for the day. I can't borrow from tomorrow's reserves because there arent any reserves. Its terribly frustrating. I've always been a very driven person - involved in lots of voluntary activities and working full time as well. I was a night owl - needing very little sleep to get me through. Boy, those days seem like such a long time ago but in truth they are only about four or five years ago. The 'new' me is very hard to accomodate.

I hope your meetings with the psychotherapist go well. Its really good to have someone to bounce these things off. I hope you make a good connection with her.

Everytime I go into a certain shopping centre in my town I am met with the most unnerving poster of a 75 year old man with yellow/orange leathered skin, wearing a bikini brief pair of swim trunks, sporting a wrinkly six pack and the scariest set of white teeth that I've ever seen. His poster tells me that I could look like that if I only took the vitamins he was taking....... I may not be much to look at but I sure as heck wouldnt want to look like him

Anyway, lovely to meet you and welcome to the Forum

Luv n stuff
Joan:rose:

PS to Meryl - if you google Lupus T Shirts there are a few places you can purchase them.