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linzi
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Discussion Starter #1
:sad:Ive been living with lupus now for aprox 4yrs been told ive had it just over a year, I dont seem to be havin as many flairs anymore but still feel very unwell all the time, been told my white blood count is very low at the min also,
I just feel i cant do anything i wanna, i used to be a cheerleader and gymnist, but now i struggle to get out of bed without help, my partner is really understandin but i just feel im puttin so much weight on his shoulders,
I just wish i could go out with my friends, go back to collage and be a normal 23yr,
ive even gotta have IVF cause my tubes are now blocked thanks to my lupus attackin them,
does anyone have any ideas or anything which i could do,
my friends and family just think im so lazy because i dont look ill on the outside,

xxxxxx:sad:
 

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Hi Linzi and (((((((hugs))))))))

I'm afraid I don't have any suggestions or ideas. I think we have all felt as you do at times and I suppose that each one of us has to work around it and find their best way of dealing with it...and then there are the days that we just can't quite deal with it :(

:grouphug2:
Katharine
 

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gosh just wanted to say i understand

:there:

and so do all the other guys here
:grouphug2:
love Rachel
 

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Hi Linzi,

I just wanted you to know that i understand how you feel.

Possibly you should go to your GP or Rheumy and discuss different medicine that may work better for you.

As for fatigue, I take Provigil but a lot of doctors wont prescribe it.

I am not sure why as it is a life saver for me.

I wish you luck moving forward and come here anytime you need support or to just vent.

We understand, we really do.:wink2::wink2::wink2:
 

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linzi
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Discussion Starter #5
i cry myself to sleep most nights, just wishin i was normal again :sad:
 

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Pollianna
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Aww Linzi, what your going through is grief. You are grieving just as surely as you would if you lost someone else. You have lost certain aspects of who you were but you haven't lost yourself. We go through this as we age as our kids grow up and leave. It won't be the only time you feel this way but the only way out is through. Don't fight it, feel it and it will pass :hug: xxx
 

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linzi
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Discussion Starter #7
thanks ph, i always seem to start cryin at the sillyist things these days,
 

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Dear Linzi

I think you should definitely see your GP about this. You could be suffering from some sort of depression. Did you know Lupus can cause depression? And I dont just mean a reactive type of depression to being diagnosed, although that in itself is something that should be treated. Have a look at this link

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutliving.aspx?articleid=92&zoneid=16

Anyone with a chronic illness that is life-changing is bound to feel 'down' from time to time but if these symptoms persist for any longer than a steady two week period and you find yourself crying at the smallest of things, then I think its time to seek some help.

Please talk to your doctor about whats going on. You can get help to lift your mood. Its not a cure all but it sure helps to balance things out.

Take good care and Im sorry you are having to go through all this at such a young age :hugbetter:

Joan:rose:
 

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Pollianna
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Also wanted to add, keep an eye on your monthly cycle. I get very depressed and weepy before my period. I think the advice Joan gave was spot on
 

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The Other Illinois Tammy
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Linzi,
It is very typical for a lot of people to see that you look ok instead of thinking there could be more wrong with you. Don't let that bother you we are all looked at as lazy, but I would trade places with them for a day and I bet they would change their minds lol. You have to listen to your body and do what it will allow you to do and when it will allow you to do it. It might take some time but you will have good days and you will over do it because you get so excited and not knowing how long it will last. I know that not feeling well can really get to you but you have been given yet another new thing to do lupus. There are 2 things you can do. 1) learn to live with it and not listen to people that don't know what they are talking about, orrrrrr 2) Fight it all the way and make things even worse for yourself and those that love you. We are here for you day or night and we all need to vent and rant and even complain at times, but we all understand what you are going through. You are lucky to have a person standing by your side to help make things easier for you. I am sure he is doing it because he loves you and some point wants to spend the rest of his and your lives together. You will find what works for you. I hope you are feeling well and doing well.
 

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:hugbetter::flowery: Hi Linzi,

Please contact your GP and get referral to therapist, I have done this and waiting.

I and everyone else knows what you are going through, please do not stress yourself (easier said than done) as this does not help.

A suggestion..send or print out the letters from the site "Spoons Theory" and Letter to Normals.

Please look after yourself:grouphug2::give_rose:

Sending you hugs & kisses
 

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Dear Linzi, i can only say most of us feel the same way you do, time from time, i am right now and have been for a while, life can be a bitch at times,

life seems not fair, i ask my self many of times was i such a nasty so and so in my past life....... I'm sorry your having a bad time right now, but think you should chat maybe to someone.

you know there are lupuk uk meeting around you more than me, as i see your from manchester, they now have made cheshire and lanishire the northwest.......... maybe you could give them a ring, maybe going to one of there meetings might make you feel not as alone, even better if you could take members of your family along, then they would understand more,

i know its a pain the looking well on the out side, wish we just felt it on the inside, if you ever want to chat just pm me, i know what youre going through what hospital do you attend only mri have a lupus nurse there?


big hugs Lin xxxxxxxxxxxx
 

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(((((Oh Linzi)))))

Just wanted to send some hugs your way. It sucks that you are having to deal with this at such a young age.
Are you sleeping properly? I only ask because I used to wake up several times a night in pain and would feel terrible all the time. My rummy told me that I was suffering from sleep deprevation and put me on dosulepin to help. At first I hated the idea of taking sleeping tablets but they have helped me so much. I still get fatigue but it's nothing like as terrible as it used to be.

Take care
Elle x
 

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Linzi, I am so very sorry you are going thru this pain. The advice you got on dealing with the loss of your previous self is totally on. :sad:

We would mourn a friend who had died or was no longer with us. Well, my dear, your "BL" self is gone. Let her be in the past and work to develop a "AL" self. You can enjoy the things she did, but YOU are not able to do those any more. [BL=before lupus, AL=after lupus]

My BL self was a AAA compulsion person. I worked full time, did child care thru an agency a few nights a week as a former room mate had left me owing his bills, I went for my ski instructor certification and passed, taught a season of skiing on both weekend days, and was taking pre-req classes at night for entrance to nursing school. I had been accepted into 2 schools. Plus I was training my American Saddlebred mare.

My AL self had to learn to enjoy more simple things, my animals, gardening - before 10 AM and after 4 PM, learning to shade garden and developing a portion of my garden for this. I had joint pain, had both wrists in splints to prevent pain, kept a beach towel in my car to protect my arms and hands from sun, learned to appreciate the overcast weather for which Seattle is known. I learned to stop and smell the roses, and enjoy the beauty of things around me.

I got involved with the local lupus society and took to learning as much about lupus as I could. My science background helped me here. I took on reaching out as a resource to help new patients learn how to live with a not so welcome companion.

I learned that just because I have lupus, does NOT mean that lupus has me. Lupus is not my identity.

My father and I still go round.....twenty years later, if I "look" ok, then I must be feeling that too. I realized it is HIS problem to solve, not mine. He has a horrid time accepting that the daughter who was so active and involved is now a different person. That daughter has had to learn to live differently. He worries about what will happen to me if and when he is gone. :worried: Will I be able to look after my mom and myself? So, I had to let his inability to accept what is now my life, be his problem, not mine.
Perhaps these fears are also with your own family. If so, bring it out in the open. The best way for healing to begin is to voice our fears and concerns.

I now use 4" of foam/memory foam pads on my bed. I cannot sleep on a standard matress as it hurts the fibro pressure points. By suspending on the foam, I relieve the pain and can get a good night sleep. Funny thing is, my mini dachsies LOVE my soft cushy bed.:rotfl:

I learned that if I kept a journal, that by putting down what I went thru in the day, I could let go of it.

Hopefully you can pick up a few survival hints. Let your family problems stay there. You can only do what you are able to do. Nothing more, nothing less.:hehe:
Sally
 

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linzi
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Discussion Starter #15
thank you to everyone who has sent me a reply,
i really dont know what i'd do without this site,
its such a great help to me and my family,

went out tonight, its been so long, normaly the last one standing but my joints started hurting so had to come home early,

im scared to go out sometimes incase i lose my benifits, you see it on the telly where people can be having a good few days people fone the benfit line, they come and watch you for a few months and you lose everything, they dont understand im not always ill every day, but then again when ive had a good few days i dont move out of my bed so they dont see me on my bad days,

xxxxxxx
 

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Dear Linzi,
I am so sorry for the way you feel. I can promise you that it does get easier and as you become more comfortable with your diagnosis you will find ways of getting your point across to others where necessary.

You will still have odd times when it feels like someone is sticking a knife in a wound, but most of the time you will cope. It is not possible to re educate the whole world, and in some cases not possible to educate people at all.
An old saying which helps me is "You can't stop to kick every dog that barks at you"-so I let thoughtless remarks go most of the time.

I am pretty fortunate in that I have friends who understand.
When I was first ill i was paranoid that I had to look ill or no one would believe me- I stopped wearing make up etc. Then I cottoned on that it was other peoples' problem not mine and now try to look as good as I can.
x Lola
 

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Just a quick PS, In the UK your Benefits are based on how you are "most of the time"- there is no law against having a good day. I am pretty good for an hour or so each day,it is the other 22 hours that are the problem.
x Lola
 
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