Feeling like it is taking over my life again

The last week has bought a slow deterioration of my energy levels and an increasing pain all over my body. Everything feels heavier and Reynauds is also kicking in. I had an amazing summer, felt really well and had fallen into the trap of a false sense of security. As the cold weather takes hold so is my lupus and I feel out of control and on the verge of tears the whole time. 

I was training for the great south run, which is this Sunday, I'm raising money for lupus uk. Two years ago just before my diagnosis I was also preparing to do the GSR and couldn't as lupus took over my whole life and I'm angry that it is happening again. 

My boyfriend has signed up to do the run with me to support me. He is amazing and says it doesn't matter if we don't complete it or if we are the last two in but I feel really sad about it. 

At times like this I look at him and our children and feel guilty that I am becoming an increasing burden. It's not fair on them to have to consider me and my moods as well the impact of my fatigue. Last week I was considering moving house to be closer to him and move our relationship up a gear but today I am petrified that I can only be a burden on him and better off alone. 

I feel like Its not in my gift to consider a normal life and I should just focus on  raising my two children and leave life at that!

5 Replies

oldestnewest
  • I know how you feel and we all feel like this in the bad times, but you have to remain positive and look to the other side when symptoms ease off. Easier said than done,I know, and its easy to give advice but not necessarily to take it. If you cant run on Sunday go and support those that can. If your boyfriend is still with you, he doesnt consider you a burden.

    Good luck hun x

  • Hey Sue, thank you. You just made me cry yes he is with me and mostly I'm not a burden. The emotional roller coaster goes on and on.... Thanks you again for taking the time and your support x

  • Hi Poppy

    Sorry your going through a bad time at the moment, and I think it's Fab that you have been training for the great south run ( I could not even think about doing anything like that) Sue is right if you can't do the run go and support those that can. From your blog your boyfriend sounds a top bloke. Good luck :)

  • Everyone deserves a life and happiness and if your boyfriend is still around, he obviously doesn't see you as a burden and wants to be with you! Class this as a bad day and move on to tomorrow, hopefully you may feel a bit better and your mindset will be different too. xx

  • Hi Poppy,

    Sorry this is a little delayed response. I only signed up to this site today and just read your post.

    I'm 18 years old and my mum has Lupus. If I ever found out that she is feeling the way you described? (A burden) I would be heartbroken. I actually admire my mum for being as brave as she is and what she faces. I'm sure your family feel the same way.

    You said that you basically feel that Lupus is stopping you from running and that it makes you angry? I realise how frustrating that must be, but from what I can tell (with my mum) anger and frustration cause flare ups. Take it easy on yourself, bless you. Try to remain relaxed and calm and if you can take part in any runs then that's a bonus! Put yourself and your body first :)

    It sounds to me like you have a very supportive boyfriend and a family who loves you. I'm very impressed you've been training for a Lupus run!