I started college last year and was looking forward to training as a midwife! This was a massive achievement for me as I have suffered from depression, anxiety and agoraphobia for 9 years! I was so looking forward to my life for the first time in what seemed like forever!
Then I became very ill and dropped out of college as I had missed too much, and was diagnosed with SLE. I know I have posted similar to this before as I was really anxious about dying etc.
The thing is I am becoming more and more depressed as I feel like my life has been put on hold, and to be honest I don't know if it is on hold of just ended full stop.
It is really hitting me hard again right now, I think this is because I was hoping to be going back to college this September but it isn't looking that way, and because the friends I was in college with are now about to start uni Another factor is that we are struggling financially and there is not a lot I can do about it, and I so want to help, I can't go on the way we are at the moment, counting every penny, having a set £80 a week for shopping and having nothing left over for anything else we might need. I was thinking of applying for a job, and found a lovely job which I would love to do, then the next day I was hit with the exhaustion again and could do nothing but sleep and I was reminded that maybe a job isn't such a good idea after all What can I do? I am on £20 a week from DLA which is because of my agoraphobia etc, and I asked them to reassess, which they did but they left it the same!
Am I ever going to be able to get on with my life how I wanted it before? My rheumatologist doesn't tell me anything. I was given no explanation about this illness, just left to get on with it myself, although he does keep an eye on me. When I ask him questions he never gives me a straight answer! I asked him if I was going to be able to train as a midwife still and he said 'I don't see why not' and last time I saw him he said 'its not suprising you are feeling down, your condition is very serious' What does that mean????
I am seeing him next month I think, and I will try telling him to answer my questions straight, but i'm not very good at it, I end up keeping quiet because I know I will burst into tears if I try ask questions
Sorry for the long rant and thanks so much for reading if you got this far xxxx
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zebedee01
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Oh you poor thing, things really are tough for you aren't they.
How about taking a list with you to speak to the consultant, and work through them one at a time, ask direct questions and ask them to discuss your medications, the likelihood of them improving your condition and to what extent?
Don't worry if you get upset, it' natural to feel anxious when faced with an illness that impacts on our life so much.
Whilst my consultant was never able to answer specifically how I would cope, she would tell me that it was important to do 'as much as I could', she later supported me to apply for state benefits and eventually to apply for my early pension when I accepted I couldn't continue in my job any longer.
You may well be able to go ahead and complete your studies, but maybe doing it over a longer period of time i.e. doing part time instead of full time for example (just suggesions) - I think one of the toughest things about coming to terms with this illness is learning to accept our limitations - with medical support and treatment we should be able to achieve our goals in life.
All the best, keep us informed.
Slowmo
P.s. are you taking/or do you need to take meds or recieve support for depression - no need to answer publically but maybe worth looking at.
Zebedee01 I know how you truly feel with regards to the money situation...I have only just been diagnosed and still waiting to see rheumy but in the mean time I have have been off work for 7 weeks which I only got SSP (because I haven't been with the business a year) I returned middle of August on a phased return to work doing 2 days a week for 4 weeks at full pay. One of the hardest things for myself is knowing that I will not be able to go any further in my career (I am in middle management and on target to go into senior position) i have just turned 40 and that hit me hard. That phased return comes to end next week and I am currently in the middle of another flare and during those days at work I have struggled (very stressful job) . My GP put me on fluoxetine and this has helped with the depression I was beginning to suffer...but then the worry about money starts the stress factor off , being a single working mum to 3 teenagers, with a mortgage etc let alone worrying about my health... Slowmo is rights is learning to accept our limitations , thats the hardest bit for me .
Just put one foot in front of the other...gotta keep going...Hey check out opening up a shop on etsy..its free...etsy.com . You can sell vintage anything (from the 90's back beyond, or sell crafts etc..go have a look) Its fun...some folks there make a living from it, but it can be pocket money...just a thought.
I woke up this morning with the most awful feeling and I keep having to fight back the tears I just worry so much about if this thing is going to kill me, I don't understand it fully, I don't know how bad mine is because the doctors won't tell me, I don't even know if I should be worrying about dying or not! But I do and it makes me so sad to think of leaving my little boy and his daddy
I think I am going to make an appointment with my GP again to see if they can shed any light. Although last time I did this a few months ago (when I was really upset again) the doctor told me it was the specialist nurses job to talk to me, and he didn't really care about how I was feeling. But the specialist nurse didn't talk to me that much either when I saw her, she kind of said I had to ask the rheumatologist!! Gosh you just go round in circles don't you, and it makes you dizzy!!!!
Hi, so sorry for you and can relate fully to the whole job/health situation as a lot of us have been through similar. I think the advice is really sound above. There are a couple of other things that you can do to make sure you are on 'top' of the situation.
1. Read all the information on the Lupus UK leaflets. Google this so that you have a really good understanding of lupus.
2. Write down the areas that affect you each visit to your rheumy so that they can be discussed in order of priority for you.
3. Keep a daily diary of symptoms - this helps a lot as I have found symptoms return.
4. You may need to push in the beginning....I had to ask to be referred to a different rheumatologist (got a diagnosed properly and on the right meds then). You may need to request physio (if you need this). I have come to realise the medical profession can only do what you ask them so don't feel you are being a pest.......ask.
5. Reapply for you DLA once you have seen your rheumy and he has a note of your symptoms. The other thing is do visit your GP and tell him/her all the symptoms when they occur because if the DLA enquire there will be a record of these symptoms.
6. Don't hold back on symptoms because you don't want them to think you are imagining things or being a hypochondriac as I know I have done that to my own detriment at times. It helps to give a full picture of what is going on.
7. Take each step at a time......let go of the past for a little while until you are on top of this condition.....to be kind to yourself.
8. Do things to calm you....watch a comedy programme, put music on that calms, anything you enjoy.
9. Break tasks down and congratulate yourself for anything you have achieved. For me in the early days it was overcoming the fatigue after a shower ...then getting through a morning....then learning how to pace each day.
10. Join a lupus support group locally if you can. Paul on Lupus UK will have details of these.
Hope some of these helps. My motto now if I can't 'fight' the illness as I have to just go along with that but I can request the support from the medical profession that I need. .........Thinking of You xx
Hi there. I think this is a stage so many of us go through when we get a diagnosis or even before that. I certainly had many episodes of depression and am on fluoxetine and amitriptyline for that. In the end I had to accept that I couldn't keep working outside the house and had to quit my job and set myself up to be self-employed. My life will never be what I thought it might be but I have a deeply caring wife who has helped me get through the dark days. All of the advice above is really useful so I hope you manage to find your way through this. I have also found meditation a very helpful tool in accepting and living my 'new' life. Are you able to join any local support groups or church group, anything that gives you a chance to have a rant amongst people who care? Good luck and a long-distance hug. Stephen.
I also like meditation, and sometimes go to a group to do that, I also love reiki and have actually trained in that myself, its fab and really helps but I haven't done any of this over the school summer hols which is prob not helping I really need to get back into that, thank you xx
I don't have any other groups to go to, I find it really hard with me having agoraphobia (which is a lot worse when I am depressed), but I agree it would be nice to find something like this to go to xx
Hi don't know if it helps but I came across something called a Lupus Checklist. It's a download that gives you a checklist with possible symptoms you can fill it in before the appointment rather than having to sit there watching them write everything down, also acts as a record for yourself
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My tendons/muscles feel as they are pulling off the bone
No hope of getting this referral not sure what I can do!
Off to see my rheumie
What can I do? Help please? 
