The Lupus Forum banner
1 - 18 of 18 Posts

·
Registered
Joined
·
128 Posts
Discussion Starter · #1 ·
:sad:hi guys,

sorry to vent am having a really bad tearful day today! had to call in sick at work as woke up in such pain it was making me feel physically sick, called my boss and she made me feel so guilty and near enough told me i have to be careful as work is not a place for sickness at the moment (meaning redundancies) i am already not being paid sick leave so stressing about bills etc... which in the long term makes you feel worse - she said that she can not cope with me being off sick for too much longer! i would be better off financially at the moment getting a sick note and then getting paid ssp but am going into work to make things a little easier on my team and also to keep me with it a little, i still am waiting for my first rheumatologist appointment and now looking at going private as getting nowhere fast!

i just wish that they could fit into my body somedays and realise how i/we feel sometimes,:sad:
 

·
Registered
Joined
·
7,800 Posts
((((((((mishmash))))))))

I think we have all felt as you do now and wished that we could actually make people experience what we live with everyday, just for a while (sometimes a long while depending on the person :lol:).

It is very hard to know how to cope with work when you know something is seriously wrong but you don't yet know what. I once went to a doc who said to me that he was sure something auto-immune was going on but as there was nothing in bloods no-one was going to be able to do anything about it. You can imagine how I felt about that statement. Luckily he wasn't a "specialist" and my rheumy was able both to diagnose and begin treatment.

Sometimes going private can be an option if you can afford to and can be a means to "start" the process. You can then be referred back into the NHS for follow up. As you are in the UK you could consider a trip to the LLC (London Lupus Centre). There are several excellent docs there (and one I would recommend less - if you're going to call for an appointment PM me before and I'll tell you who). You can usually be seen there within a week or two at most.

Sorry you're feeling so down today, more hugs :hug:

Katharine
 

·
Registered
Joined
·
4,968 Posts
(((((Mishmash)))))

Just wanted to send you some cyber hugs in hopes that you get feeling better soon. I hear your frustration and can sympathize with you, think we have all been there.

It is very hard for a employer or for that matter friends and family as well to see sickness when it is not evident on the outside. I have that spoon theory printed out and ready to hand to anyone who just does not understand what we deal with on a daily basis.

I hope your health improves and if your able to afford private care then I think Katharine gave you great advice.

Let us know how you get along.:wink2:
 

·
Registered
Joined
·
128 Posts
Discussion Starter · #4 ·
thanks to you both for your support and advice-- i am looking at finances at the moment and may pm you Katharine for the specialist - do you know if you need to be referred by your gp?

i read the spoons theory and thought it was brilliant and exactly describes what days can be like - i had a day full of energy saturday and was excited trying wedding dresses on used up all my spoons for the week i think - need to learn how to pace myself!

it is always such a comfort having this forum to escape to, vent and chat to people who understand and i thank all of you for your kindness and help!

chelle
 

·
Premium Member
Joined
·
7,567 Posts
Hi Michelle, you can self refer to LOndon Lupus Centre. They do like to see a gp letter but it is not essential. It is better to have your gp on side though as they can give you all recent bloods to take and any supporting evidence or history.

I went to London Lupus Centre and it was worth every penny.

I understand your dilemma re work, the limbo pre diagnosis is tough, but then nsoemtimes after diagnosis employers are not that helpful anyway. I would keep a diary of remarkds she says to you, so that if it comes to it you can prove unfairness.

Take care

Deb
 

·
Registered
Joined
·
203 Posts
hi mish
sorry to hear you are having a bad time hun,i would like to share this with you, to understand the illness they have to know what it is, how can people understand if they dont know anything about your illness but in most cases people just dont want to take the time to learn about lupus which i think employers should do im not saying that you should be an open book its up to your boss to have a little compasion and ask if you need any help, i dont mean to sound of because im not and im not blaming you its just angrers me when ignorance is so big with people.i would love for them kind of people to live just 1day in our shoes.

take care and hope things are soon better for you


donna
 

·
Registered
Joined
·
1,399 Posts
Hi Mish,
I hear you on this one, My boss at the moment is very understanding. But my previous bosses where not, when i asked if i could do light duties instead they said no, do the job or leave. So i left, i could not work with the lack of understanding from those people.
It really is hard for others to understand how we feel, cos at times we look to healthy, and it is what is going on in the inside, which only we know they can't see it.
Big Hugs Hun, I hope it gets better for you, Work wise & i hope you feel better soon.
 

·
Registered
Joined
·
128 Posts
Discussion Starter · #9 ·
hello All,

just thought i would let you know that with the help of a very helpful caring fiance, i am seeing a rheumatologist this evening at 7 pm, any help that anyone can give me in terms of making the most out of this appointment (as is private and want to achieve as much as possible) would be grately appreciated. hopefully i can get some answers.

thanks again to all!
 

·
Registered
Joined
·
7,800 Posts
Hi there,

Other than the obvious list of symptoms, blood test results, photos of rashes etc. I would say that it is very important not to play down symptoms and to give concrete examples of what pain/tiredness and so on means you can't do. Saying "I have a lot of pain" to a doc is very vague, putting it on a scale of one to ten (10 being childbirth/gallstones...) helps explain. Also I said things like "I can't dry my hair because I can't hold my arms up", "I can't stand in a queue at the supermarket due to pain in my feet" - obviously those are my examples but you get the idea.

I hope the appointment goes well and that you're seeing a lupus specialist rheumy. Fingers crossed for you :fingers:

Katharine
 

·
Premium Member
Joined
·
7,567 Posts
Hi, don't wear make up or nail varnish so they can see your skin and nails. Have alist of things you want to say, get answered in case you forget anything.

All the best, I hope it goes well for you.

DEb
 

·
Registered
Joined
·
128 Posts
Discussion Starter · #12 ·
Hello all

i thought that i would update you on my rheumy appointment this evening, luckily my face flared up today so that he could see it big plus, said that with my history, previous bloods, positive ana, esr etc.. and my face he is pretty sure that i have lupus. he has put me on pred as a quick fix and i need to go to his nhs clinic tomorrow for him to run some more blood tests.

i feel that this was a really positive appointment and finally pleased that someone will put a name to how i have been feeling. he has told me obout plaquenil and methotrexate and told me to have a look at them and we will look at treatment when we see eachother next.

although now it is sinking in i realise this maybe the start of a long road, but at least i have moved off the start line. i would imagine that i would have lots of questions in time, he has given me patient leaflets and his rheumatology website to refer to. its a lot to take it but with the help of everyone on here i understood lots that he was saying.

thanks

chelle
 

·
Registered
Joined
·
7,800 Posts
It sounds like you had a good appointment :) I'm so glad you went and so glad you got taken seriously.

You are right that it will be long road yet as treatment takes a while to kick in and adjust to each individual but it is so much easier to deal with something when you know what you are dealing with and not thinking you're losing your head.

hugs :hug:

Katharine
 

·
Registered
Joined
·
1,399 Posts
Well done Mish,
It looks like you are on the right road now.
Hugs.
 

·
Moderator
Joined
·
11,410 Posts
I am so happy that your appointment went very good.:)

Will be thinking of you tomorrow.

:grouphug2:
Lyn
 

·
Registered
Joined
·
15,684 Posts
That's great news Mish - well done! :hug: No it's not an easy road getting meds tailored to our needs sometimes, but at least there is a road in front of you now. As they say, it's easier to fight the enemy if you know who they are ;)Take care,

love
Lily
 

·
Registered
Joined
·
128 Posts
Discussion Starter · #17 ·
hi all

thanks for your support have woken up feeling all a little beit freaked out today, it is what i was thinking the dx would be but when someone tells you its all a bit different. i guess there is always the possibility that it is a virus as everyother person wants to tell you it is lol! my sister is starting to freak out and is googling everything and anything, just want to get it clear in my head before having to worry about how the rest of the family cope with it - i know that is selfish but hey maybe its time to be fore a little while. lol

hope everyone is having a good day! I am off for which i can imagine would be 1 of many blood tests.

chelle
 

·
Premium Member
Joined
·
7,567 Posts
Hi Michelle, I am pleased that you had a really good rheumy appt. It is nice to be taken seriously. It is hard to have our fears confirmed and it does take a while to adjust to. Be patient whilst they try to get your meds sorted as that can be frustrating. Just take one day at a time. Hope today goes well.

Take care

Deb
 
1 - 18 of 18 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top