[Hatty]

Hello

I guess I just wanted a bit of support, as this being the only place to really be honest to people who understand...

I sometimes find it so hard to remain positive, to just keep on going, keep smiling, keep getting out of bed each morning. My children are nearly 2 and 3 1/2 so i don't have a choice, but sometimes it takes all the willpower I have not to just run away and hide in my bed! They are great, and I have a wonderful husband and a network of supportive friends, but I just feel so worn down by the constant pain and tiredness. I've recently got bursitis in my hips and my fingers have got worse, so the constant putting on shoes and squatting down is near-on impossible. I'm trying to teach my children to do more for themselves, but sometimes my son is really defiant and I just want to burst into tears and say I can't cope any more, it hurts too much, leave me alone. Also my daughter has either HMS or EDS so the worry over her and dealing with her pain and tiredness is exhausting.

I know my friends all see me as some kind of supermummy but somtimes it's just all too much, I don't see how I can stay rational and calm with toddlers with something new appearing all the time to hurt! I hate myself for getting cross with them and overreacting about things because I am in pain. My husband is lovely but he does have to go to work, they are going to preschool, I am trying various painkillers with limited success....

I suppose I don't want solutions, I just want to know I'm not the only one out there who wonders every evening how they are going to get through the next day!

Sorry for the gloom!

xHatty

 

[Maia]

I wonder the same thing... & I only have 1 toddler at home (she's almost 3). She will start preschool in the fall and I can't wait for the 1/2 time relief for me (how awful is it to think like that?). I have had all the same feelings as you mention...

I found really easy two velcro strap shoes - makes life a lot easier for me as they are easy to put on, and she can take them off. I have trained her to sit in a lazy boy chair for me to put them on (minimum bending then for me...) She is learning to do a lot more herself, and I am very fortunate she is usually very willing and cooperative and helpful. She is pee-trained now and THAT helps a lot too.

I can only say... that I just do it because I have to. When you have children, especially young children, you don't have the luxury of breaking down completely.

 

[setApart]

I too can totally relate I have a 3 yr old and 5 yr old and 11 yr old. The 2 little one's are such a handful sometimes when they are together(I call them Bonnie and Clyde):lol: Before I started on the plaquenil I had such bad fatigue I literally don't know how I managed to get to work everyday. Thank goodness that the plaquenil kicked in mid november and relieved some of joint pain and stiffness and gave me energy. Now if I could get over these horrible muscle aches which tend to be more focused in my hands right now and hip bursitis in both hips which is now making my lower back hurt from sleeping to much on it as a result and the cold chills. You just take what meds you have to take to make it through the day and hope tomorrow is a better day. Hope tomorrow is a better for you and me

 

[DDR]

Hello Hatty! I'm currently going through an emotional breakdown that I keep hidden! Almost every moment of my day I wonder how i keep going on living my life because it's not normal anymore. This disease can take a turn for the worst so suddenly. Basically I have no control over my life. I get so angry! I wish I had more energy for my nine year old and my six year old and that my laughter wouldn't come off as being fake because the truth is, I have nothing to laugh about. My children are the only thing in this world that keep me pushing foward so I try just for them! I truley hope you will find a way to cope and this site is good way to start. "WE" understand! take care!

 

[sunflowergirl2]

Hatty! I don't know how you do it! Luckily I didn't get lupus until I was 40 and my kids grown. I know that when I have my granddaughter's for a few days (4 and 5), takes me a few days to recuperate! Hugs to you!:grhug: Cathy

 

[raggedyann1]

Hatty,

Not a single one of us can honestly say that we able to stay positive everyday. That is where being able to come and vent is a wonderful freedom we have with each other. My son was 10 when my lupus roared out of remission. We made a decision to keep him in daycare because we have very few kids his age in our area. It was mostly selfish on my part as I couldn't have handled him in that first year or two.

I don't remember if you are one of the people considering steroid injections for your bursitis or not. I was remembering yesterday that when I complain about the bursitis at the rheumy's office he has given me a kenalog (synthetic steroid) injection in my buttocks since the bursitis can be caused by lupus. I also get the injections in the hip.

What I am trying to say here is please let your doctor know how limited your lupus has made you. There are solutions but sometimes it takes a bunch of trial and error. You don't have to live like this.

Please let us know how things go.

take care,
Karen

 

[greenhaggis]

Hugs!

I just want to know I'm not the only one out there who wonders every evening how they are going to get through the next day!
xHatty

Hatty,

I feel like this every night, so you are not alone! Most days are tough for me and then some get even tougher. On the odd occassion my children have noticed that I have tears in my eyes - they ask me if I'm okay and give me a big hug (they do know that I feel unwell sometimes) - this makes me feel much better inside! I hug my children every day (lots of times) and they say its makes them feel good too!

Take care!

Lesley

 

[Hatty]

Thank you everyone - while it's sad to hear so many people having a tough time (especially with kids - that I-can't-just-call-in-sick job) it was lovely to have your support and to know I'm not the only one.

Sometimes just a toddler's cuddle can make it all seem worthwhile, and sometimes just one spilt glass of milk makes you want to give up and sit on the floor and wail (if only I could get down there ). I guess it's just a case of taking it day by day. And I think I'm going on a trip to my GP to talk about painkillers, because there must be something left that doesn't give me horrible side effects! I stopped diclofenac because it seemed to be making me really anxious and miserable, but am feeling that now so maybe it's just me !

And as so many discussions here say, it makes it that bit harder that you look completely fine, even if your walking is a bit odd, and so no one has any idea how much of a battle daily life is!

So big hugs to all of us and may we manage not to let it overcome us. I guess learning that people are made differently and sometimes hurt and need an extra cuddle is no bad thing for a small child to learn.

xHatty

 

[karen.w.]

hi hatty

I am sorry to hear you are feeling a bit down :sad:
thats the best thing about this forum we all understand each other perfectly & it helps to know we are not alone.

I can relate to struggling with children as my lupus started before mine were born & sometimes I wonder how I ever coped my daughters are now 12 & 8 and honestly it really does get easier hatty..my oldest daughter especially enjoys tidying up & helping out..although I never pressure them to do too much they just automatically do it anyway.

I hope you will feel better when your condition is more stable..and remember it's normal to feel this way,all part of the illness & its frustrations!
& I agree with the hugs part!!it helps more than anything else & keeps your spirits up

also don't be afraid to ask for help hatty,most people are only to happy to help out!took me a long time to realise that

take good care hatty
sending you lots of healing hugs :grhug:
karen x

 

[peonyprincess]

Hatty,

I totally understand how you feel. There have been many days that I have wondered how I might make it out of bed the next day. There have been nights that I pray that I am able to get out of bed the next day, especially when there has been something important that I have to do the next day. It absolutely drives me crazy that this invisible disease causes me such visible problems. All I can do is to take a deep breath and attack each day as a new day.


Nancy

 

[Joandublin]

(((((Hatty)))))

Im so very sorry you are having to deal with this stupid disease and raise two little ones as well. Its very, very tough. I think that people with Lupus have got to be the strongest people ever as they have to develop daily survival strategies:hug:

I think you are absolutely right in that you must talk to your GP about better pain management. Dont just go there and say you are in pain. Be very specific about how limited your daily functions are. For example, tell him you cant bend down to tie your baby's shoes or cant lift them up or whatever else is specifically affecting your daily life. Be honest and tell him you have a hard time adjusting to pain meds so it might take a lot of trial and error to get something that suits but you are in it for the long haul and ask for his co-operation.

There are many different types of NSAID's out there. I couldnt tolerate diclofenac (brand Difene) either. It gave me horrific diarrohea and did a real number on my liver enzymes. You can try another one. Mobic is one that a number of people have had success with. I tried it and although I got no side effects it didnt have an impact on my joint pain so between myself and my rheumy we decided to stop it as there was no point in taking a med that was having no effect. My joint pains are normally tolerable without an NSAID at the moment - I just take Solpodol if the pain gets too bad. However I may need another NSAID in the future and if I do I will try something else.

Talk to your doctor also about the fatigue. Tell him how bad it is and how depressing it is for you. Ask him if there is anything he can recommend that might increase your energy levels. Fatigue is my worst and most debilitating symptom. I have determined that if my fatigue levels continue I will go on a quest to relieve this specific symptom.

Some members here have reported good results from a drug called Provigil (generic modafinil) Its a stimulant drug that promotes wakefulness. You might like to look it up and discuss it with your GP.

In the meantime Hatty I send you much sympathy and hugs. It wont help with minding the kids but know that others out there understand and experience what you are going through. I have an eight year old and work full time and sometimes its as much as I can do to drag myself out of bed in the morning, let alone do a days work.

Take good care
Joan:rose:

 

[jancm]

Stay Positive

I really do sympathise, my son who is now 14 has ADHD (diagnosed at 6) and life has been (and still is !!) very hard , (my daughter is 11), but with all the challenges my son faces and overcomes, it give me strength to keep going, that 'love you mum' last thing at night is what it is all about. Anyyour friends are right, you are a supermum. Take care

 

[jaki]

hey hatty
i hope it improves for you i was diagnosed after my daughter was born 7 years ago.Crikey it was hard i remember going down stairs with her on my lap because my hands and legs were so bad.the guilt does'nt get easier but getting along does.I found with my daughter little jobs made it easier for me i arranged her cupboards with stickers underwear in one drawer with a snow white sticker pj's in cinderella drawer trousers in barney cupboard and so on.it did help and she felt really important.hope tomorrow is better for you.
take care
jackie