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Discussion Starter · #1 ·
Hi,

I recently joined your forum and have made a couple of posts, most to offer support to others. This is partly the problem - I find it easy enough to offer support and words of encouragement to others but am not managing to cope myself.

I was finally diagnosed with MCTD/SLE January this year - as mentioned on a previous post. However, end Feb/Begin March was taken ill. Thought it was a virus/mild flu and kept working and pushing myself. Then within a few days I became very ill and was rushed into hospital. After a week I was discharged being told I had experienced an acute flare of SLE. My symptoms - severe rash, swollen painful glands in my neck, high temp 40C, muscle weakness, painful weak stiff joints, unable to stay awake etc. They increased my steroids and kept me on the other meds as normal - 300mg Gabapentin 3xday, 400mg Plaquenil day, 1g paracetamol 4x day, 100mg tramadol 4x day, butrans pain patch, omeprazol 40mg day, Pravastatin 10mg day.
My predinsalone is now down to 13mg daily but I don't like being on them as they make me bloated and overweight.
I am really finding it hard to adjust and come to terms with my diagnosis and this recent flare - to which I am still trying to recover after 2 months. I had a bad weekend - overdone it, and now feel cross that I can't manage a simple thing like shopping with my family. I feel self concious at having to use a stick and pathetic that tasks i.e. showering and washing my hair, leaves me exhausted, shaky, nauseous and in discomfort etc.
I feel generally low, tearful and noticed today that I feel flu like again and my glands in my neck feel tender.

I'm sorry to sound so glum but I thought that once I finally got a diagnosis I would feel happier. Instead I feel worse, scared and feel guilty at not being able to do much with my family.

Beanbag:sad:
 

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Hi there Beanbag!

My you sound like you have had a few tough months! I hope the flu symptoms go soon! My health seems to change rapidly during the course of the day so I I feel like a yoyo!

I have not had a hospital stay due to Lupus and hope one never occurs! I do feel pretty much like you though. Last week I kept bursting into tears - I think I was just so tired mentally and well as physically, feel a bit better this week! I've had to send some of my children off to holiday clubs to help this school holiday, but golly do I miss them and feel guilty.
Other than my illness there is no need for me to send my kids to holiday clubs as my husband works from home and I take care of the domestic side. Normally we share activities over the holidays and then do some all together!

Anyway I'm off the bed now, take care & hope a goods night rest helps!

Love Lesley
 

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Hi Beanbag,

Again, I have to say it - you sound like you're describing me! :lol:

My recent problems have suddenly made me realise that I am dealing with something relatively serious, I can't just stick my head in the sand...and that, most unfortunately for me, steroids do seem as they are going to be there, part of my life, keeping me breathing (My GP's view, not just my idea)!

It is hard as, for me, it's like a kind of grieving process all over again. I could cope with having lupus, I could cope with the meds... I can't quite get my head around what's going on now, with not being able to breathe so often, with not being able to do such simple little things that everyone takes for granted, with not being able to take my son to the zoo for his birthday because I can't stay on my feet and can't breathe when walking...

That's just me being frustrated. I know I'l bounce back tomorrow and the day after. I know I'll keep going and I know that I'll be very determined to find a solution and improve all that but at times I think we need to just say "no, it is not OK!"

Like you, I find it relatively easy to try and support others but I never used to talk about me. However, when I had that bad attack of not breathing, everyone was here, and I did it, I wrote a post and it really really helped to know that everyone was there, that I wasn't being a drama queen and that others had gone through the same :)

many hugs
:grouphug2:

Katharine
 

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Hi Beanbag,

Firstly let me say that I can totally relate to how you feel as can many others here. I am so glad that you joined the boards as it does help you to cope talking to like minded folks.

When I was diagnosed with SLE in June 2006 I was half expecting it but was equally as shocked when the rheumatologist told me. I pulled myself together and decided I could deal with it and that I would push for the best treatment. That worked for a while and then early last year I hit a real low and was not coping with my diagnosis at all. I wanted to shout at people to let them know the pain I was in but on the other hand I didn't want them to know at all. I hid it from everyone which I now realise was not the best thing for me. I am like you and find it easier to post to other members and ignore how I feel.

Having lupus is a bit like being on a rollercoaster - there are so many ups and downs with thrills and spills along the way. I haven't been through half of what you have so I can only imagine what your rollercoaster ride has been like!

Many people will say that you go through a grieving period - I have to agree and it's ok to let yourself do that. Then think of the positives in your life and focus on them. It's also ok to feel scared, I don't think there is a single member here who hasn't felt like that. The good thing is that we are all here for each other and there is always someone that can relate. I wasn't one for putting myself 'out there' but every time I've posted a thread someone has replied. It's a good feeling to know that someone else has taken the time to think of you.

Take each day at a time Beanbag, it is hard to accept your daily limits but one day you may only put the kettle on and that's ok......the next day you could be making dinner, out walking, shopping etc.

Thinking of you and I hope you feel better soon,

Hugz, :hug:

Pam xxx
 

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I relate very much to just about everything you've said. Many people, if they've struggled for some time to get a diagnosis are very relieved to finally have an answer. For me, it was a shock. I got it after just a few weeks of moderately severe illness (fever, rash, bad fatigue, joint pain, swollen joint, etc.). But I fairly quickly pulled myself together after diagnosis, learning everything I could about lupus. I was very logical about it all... thought at least now you know and you're on the right meds and it will get better and there is a very good chance at a normal life span, etc.

Then it got to be about 5 months later, and there was a bad flare again and I was put on steroids and definitely hit a low. Lasted a few months... I thought I was supposed to be feeling better by now. It had been 5 months so why wasn't I any better? Why did I have to sit down instead of peruse the book aisles with my friends? I had to stop riding my horses. A lot of the things I loved at the time were being taken away from me.

Now that it's been 6 years later, I have learned to adjust my expectations and that makes it better for me to deal with. I don't work anymore. I don't ride anymore -instead I drive a miniature horse. I don't work out at the gym anymore but do still manage to walk the dogs most days. There are several weeks each year where I can't do that though either. I do minimal shopping. Sometimes I have to send out hubby...

So many things have changed, but I don't mind most of the time at least. I'm still here, I love many people and many people still love me. And that's what really matters.

Getting a diagnosis is just the beginning... & truly it usually gets better. Either the meds help, or you get a remission of sorts for some period of time, or you learn to adjust your expectations & learn to cherish what is really most important in life to you.

You are going through a big adjustment right now, my advice would be to be as kind to yourself as you would be if you were writing to someone else in your shoes. (((hugs)))
 

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Hi Beanbag (great user name!;) )

Sorry to hear you're feeling so poorly - you know what - I think you may be trying too hard!

Could it be that you are fighting your diagnosis and trying to carry on as before??? The sad thing is, we can't carry on as before - something has changed - it's scary - it's not fair and it's a pain in the bum - but it is fact - so my advice for what it's worth (only been diagnosed a few days myself so what do I know) however gonna give it anyway :hehe: is to be KIND to yourself and stop beating yourself up physically and mentally - if you feel good one day - do more (but don't push yourself) and then on rubbish days slow it right right down - learn to listen to what your body is telling you (at the moment it is screaming at you - I can hear it from here!) to slow down and take it easy - your family will understand - you have nothing to prove and will be more use to them if you keep yourself as well as you can - that means being responsible and knowing when to take it easy. It takes time to adjust to the changes that are forced on us but it will become esaier in time.

Look after yourself and I hope you feel better soon (the nausea is a real gross one isn't it!!) Keep posting and remember you're not alone - we're all on this crazy roller coaster together xxxx
 

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(((((beanbag)))))

I am sorry you are feeling a bit down :sad: It is understandable & I can also relate to how you are feeling.

you have already been given excellent advice so I just want to send you lot's of empathetic,healing hug's :there: :grouphug2: & let you know that I am thinking of you.

be gentle with yourself beanbag,it will get better.
lot's of love..karen x
 

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Discussion Starter · #9 ·
Thank you all so very much for your kind words and advice. I think the advice on grieving is quite true. I used to be a very independent lady and was brought up to do everything myself and stand on my own too feet. I was always active and when not working I was running errands for family and friends and acting as relief carer for my husbands grandparents when my wonderful mother in law went on her well earned breaks.
Now I find it hard to say to family and friends - sorry I can't do that today - and I also find it hard to ask for help as it makes me feel I have failed at being independant. Yes I am hard on myself, was in a wheel chair for a while as a child due to arthritis and promised myself I would never be wheel chair bound again, perhaps that was too big a promise!!!!
I appreciate all the love and support coming from you all and it makes me feel better to know that people out there care and understand what I am feeling.
I am being easier on myself today - last few days have pushed myself too hard - and am resting and making more cards. It is also nice to have the sun shining into the room rather than heavy rain, sun lifts the spirits - when not sat in it!!!

Thank you all again

beanbag:)
 

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Hi Beanbag!

I'm glad you are taking life easier today! Are the flu symptoms getting better?

Love Lesley
 

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Discussion Starter · #11 ·
HI,

No, unfortunately they aren't any better. Probably doesn't help that the rhueme is trying to reduce my steroids - down from 20 to 12mg prednisalone.
Think few days of R&R is in order. Go back to St Thomas' on 1st May so will see what they have to say then. Mother in law phoned and mirrored my concerns about whether or not I would ever return to work. Perhaps working in an ED is not the best environment for a luppie pt but nursing in the emergency department is the only job I have ever wanted since I was knee high to a grasshopper!
But I know I am not going to do myself any favours worrying about that today so am going to continue to loose myself with my crafting bits and be creative while resting.

beanbag:lol:
 

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Beanbag, you are correct going back to work is the last thing that you should be worrying about - health is more important! I'm assume your employers the NHS are okay with sick leave as they are in the business of sick people. How long have you been signed off work for - is it until your next appointment in May, I hope it is and you rest-up if you can. Working in the ED is a very admirable job to do, so I hope that your symptoms settle down so that you can return to a job that you love!

My GP says I'm signed off on sick leave too, but unforntunately I do not do paid work! I stay at home and look after the kids and hubby. I must say chores have slipped by about 75%!! I just hope that the Lupus does get under control for me as I find the thought of applying for benefits very daunting. My husband is self-employed based at home which is a help for now, but there may become a point when his work and our income suffers due to the Lupus. Well that's enough of that!

Enjoy your card making!

Love Lesley
 
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