Newly diagnosed

I'm very new to this site but have found it very useful so far. I was diagnosed in January this year after around 18 months of just getting worse and worse in terms of odd and extreme pain, overwhelming exhaustion, muscle and joint weakness, and various other symptoms which everyone will recognise. Finally after returning from holiday last year lumps began to appear alover my body and I went to the doctors again in tears with the pain and worry. I was very lucky that the gp recognised something and did blood tests again. Hey presto there it was. The journey didn't end there though had to wait for weeks for an appointment and when I eventually saw the consultant no diagnosis. I wrote a letter of complaint after suffering weeks and weeks with no treatment. Eventually got another appointment then diagnosis. Have been taking hydoxychloroquine for 3 months now. Its not really helping me and my condition is getting worse all the time. Spoken to my doctor who says to continue with medication as consultant said to try it for 4 months. So I guess thats what I will do. Its been a complete nitemare in terms of income. I cant work, there are days when I cannot do anything except get myself out of bed. I am lucky and have had a lot of support from friends and family. I live alone which I always really loved and still do in lots of ways but its worrying sometimes especially when I have dizzy spells. Anyway esa total nitemare was refused and told I am fit for work, I just laughed and am currently appealing. Being a very positive person is one of my best traits but this whole experience has completely floored me and I find myself depressed and hopeless at times. I feel so sad for the person I used to be I had a career I studied and worked hard for and now I cannot even qualify for the benefits I need .....its so unfair. Believe me if I had a choice I would not choose to be unable to support or take care of myself I cant believe how callous dwp is they really don't give a damn. I am 47 and refuse to believe this is it, my life is not over. What I have decided to do is to be sad when I feel it but to keep pro active and get better. It seems to be only thing I can do. There are days though when I feel so ill I cant bear it and I just want to be asleep. Another thing that bothers me is that people say I don't look ill, I do to myself I don't recognise myself some days. Its so frustrating no-one can see whats happening in my body and I cannot do anything to express the pain and distress except cry ... what a monster this thing is... but I wont let it rule my life forever I'm determined to get to a point where I'm able to have a life again...... right now though the dominating factor for me is this illness but not forever ..... it helps a lot to see I am not alone there are so many of us out there... it feels really good to share this with you all and even though my life is Lupus, Lupus bloody Lupus right now I am relieved that I at least know what it is... thought I was going mad for a while and I see I have that in common with most of you too...

I look forward to reading and appreciating many more of your posts .... take care everyone :)

8 Replies

oldestnewest
  • You poor thing, your comments echo how many of us feel at various times. I'm sure everyone on here can relate to how you feel, it really is overwhelming and frustrating getting used to the limitations of this illness.

    You are quite right to remain positive, life is not over, I'm in my 40's too and like yourself studied, worked etc and have lost a career I worked hard to get to (like lots of us on here i'm sure). The way I look at things now is to tell myself this is the situation now, it may change in the future and hopefully meds/treatment will make life more bearable for you. I have learnt to accept the situaion I'm in now.

    As for benefits income etc, don't give up, look through the blogs on here and you'll find lots of info regarding benefits awards etc, but don't give up, you are entitled to it, you've paid your dues, you are genuinely ill and dont let anyone tell you otherwise.

    Best of luck and stay well and positive

    Slowmo

  • Hiya laine, your story is a familiar one, and I think a lot of us can relate to it, could even of written it! Please dont give up the fight with the benefits, and like slowmo said there are lots of posts about benefits on here, and also info to help claim, and appeal, so dont give up! It is a very isolating condition, and finding others who can relate is such a good thing :) Hang on in there, keep chatting, and you can ask any questions on here and usually get an answer, hoping the meds kick in for you soon, take care x

  • yore in good company laine everything you have said has been said before regardng you benefits over 60% have thier appeal upheld so just keep going. i am newlt diagnosed ans dont know where i would be without this group.

    keep strong and take care

  • Hello lanie & welcome to the site

    It's great to hear that you are so positive about your illness, despite the fact that it has effected you so much. Once your diagnosed it can be a bit of trail & error to find a medication that helps you, & plaquenil often seems to be the starting point.

    I have found that there are many little things that I can do to help my illness, like eating well, gentle exercise, afternoon naps, pacing myself, avoiding the sun, & stress if that's possible! The thing that helped me most are the support groups run by Lupus UK. It sounds like it would be difficult for you to attend these at the moment, but you might find your local group have a facebook page you can join & get to know people there.

    There are lots of good blogs & books out there if, like me, you find it helpful to read about other peoples experiences. One of the most positive lupies I have come across is Sara Gorman. She has a book & a blog called Despite Lupus. But am sure you will find lots of others that you like the look of, & of course you have already found this wonderful site.

    Very best wishes. X

  • Thank you so much everyone for reassuring me that I'm not alone. I will continue with my plan and look for local support as well as keeping in touch on here. I hope everyone is well today :)

  • Hi,

    At the moment have UDCT and still waiting for a full diagnosis... I've been on Hydroxychloroquin for 18months - nothing happened for the first 6months, then I could notice some improvement at last, so hang in there.

    Keep positive - your life isn't the same as it was and will not be again... You should live the life you have NoW - and try as best to accept it - remember, you're still complete...100% you.

    I have found acceptance is the way to go for me...

    Have you applied for DLA - I did and was awarded it... Use the CAB for benefits advice, they take a lot of the pressure of you and will do appeals for you.

    Keep strong and positive.

    Xx

  • Hi Laine, hang in there, it is different for all of us and you will have light at the end of the tunnel. Completely relate to the depression and the downward spiral. I am hopefully on the up at the moment and I am keeping my fingers crossed. Sure everything still hurts but it mellows as you get more used to it. I was lucky my company had a permanent health insurance and I have been able to get back to working part time.

    All I can say is I have hated everything that has happened to me and the complications I have experienced, but I have realised it has been a strange blessing I was working too hard, stressing too much and missing out on things. Lupus is life changing but it gave me a chance to assess my life, find the good people in my world and appreciate them more.

    I work as much as I can, I get to enjoy friends and family more and value the good times, even though I'm heavily medicated lol.

    Well that's all I had to say, but today has been a good day for me and I am going to hold on to it for as long as I can :-)

  • Hi Laine, I have only been diagnosed since January too even though I have had the symptoms two years. Like many others on here I can completely relate to your post and the depths of despair that occurs before the meds start to work and then the regular sinking feeling of...is this what it's going to be like now! At the beginning the fatigue was the most awful thing ....after 6 months on the meds the placquenil (hydroxycloroquine) kicked in and helped with this. What I would say to you is it is just a matter of time before you get on the right meds. For me placquenil helped but then other stronger symptoms developed and it wasn;t enough as I felt like I was permanently in a flare up/infection. Now I'm on methotrexate and whilst my life isn;t like it was, it has helped a lot to dampen the symptoms down. For others it is different meds that work for them. My advice is to look at all the meds, their positive effects and the side effects so that if the consultant does ever want to add another med you are able to make an informed choice and ask appropriate questions.

    Also remember, what med will work for work may not work for another so it's a little bit like trial and error. Like you I had a very good career that I loved and have worked for 30 years. I have not worked for the past year and this is the hardest thing to get over for me. I'm 50 and thought I had another ten years at least left of work. What I will say is that I am learning to manage the symptoms better as I get to know when to see the GP, if a flare up is mild or severe and when to rest.

    I still hope to return to work sometime in the future but it may be only a few days each week but what I will say is that whilst everything seems to need planned now so that I don;t do too much is that I have learned to look at things differently. Yes money wise we don;t have so much but as long as we can manage then that's ok. Secondly I value my friends that I have been to explain what is happening to and that they understand and thirdly the support of my family.

    I had a great day yesterday watching all the family snowboarding (indoor place) and two years ago I would have had a go too. But six months ago I would have been too fatigued to go with them so instead I found myself grateful that I could even watch them yesterday. It's hard I think ..... and the hardest part is letting go of what was to make way for a different type of life. Please hang on in there and believe things will be more manageable in time with meds and getting to know the condition more. I'm still learning and this site has been a lifeline. All the best to you and hope the meds help to improve things for you. x

You may also like...