Thursday, 31 May 2012

Can I still look forward to the future?

This post is quite a scary one to write. I’m a little hesitant to put such personal feelings in a public place but this is what I wanted the blog to be about so I’m not going to chicken out when times get tough.

I haven’t felt up to writing anything for the past week. I’d felt myself starting to slide downhill but thought I was staying on top of it, feeling a bit down after everything that’s happened is to be expected after all isn’t it??

Well everything caught up with my on Sunday and I had a bit of a meltdown. We’d spent the day at my beautiful goddaughter’s 2nd birthday party and then met a few friends at the pub. I’m not going to lie, I probably had one glass of wine too many in an effort to relax and enjoy myself and the floodgates just forced themselves open.

Whether sparked by spending time with my lovely “normal” friends, being signed off work for yet more weeks, or just everything finally coming to a head and being so fed up of constant, constant pain, once we got home I offloaded all the feelings I've been trying to protect my family from onto my boyfriend. I don’t know what got into me but at that exact moment I hated him for being well and not being able to take some of this away from me or understand it properly. He did his best to be patient but the more he did the more I pushed his buttons. I said some things I regretted instantly but I couldn’t stop. I know I’m angry and that I’m entitled to be but I that doesn’t make it ok to hurt him.

It got to the point where I felt completely trapped and overwhelmed that I couldn’t see anyway out other than to leave. So I walked out. He called my mum and I spent the next hour or so walking around in the dark trying to work out where I could go just to get away from everyone and everything. They eventually found me and talked me into going home but the whole experience has made me question myself and my life.

All I’ve ever wanted is to get married and have a family. I’ve found the man I love and was looking forward to the life we were going to have together. Yes, I was diabetic and that was annoying, but it was manageable, but now, well now I’m questioning whether thinking I can still have all that is just selfish.

It’s not the possibility of passing either condition on, there are relatively low chances of that in either case, and anyway, there is no history of either disease in my family so what happens, happens! But it’s whether I can live with forcing my future family to have to deal with what is going to happen to me.

I have two completely unrelated auto immune conditions to deal with. Clearly something in me isn’t wired correctly. My diabetes was manageable but all consuming even by itself, but now on top of it all, I’m in pain, physically and mentally exhausted and if I’m honest pretty depressed. I can’t help but think that whatever can go wrong, will go wrong.

I have seropositive RA and am also positive for anti-CCP. Being positive for both of these things can be indicative of a more aggressive/degenerative RA. This single fact terrifies me and keeps me awake at night. On top of trying to get my head around this emotionally, I’ve had to reduce my prednisolone dose to help control my diabetes and as a result the pain in my wrists and ankles has increased and is constant. The only pain relief that was working had to be stopped because it caused me problems with both my digestion and feeling frighteningly “drugged”, like I wasn’t myself. I just can’t get away from it for any amount of time in order to process everything that’s happened with a rational brain.

Both my boyfriend and I lost our fathers in the last few years. I know first hand what its like to watch someone you love be in terrible pain and deteriorate in front of your eyes and how it effects everyone else involved. I don’t want to be the cause of any more pain for everyone. I know this all sounds very dramatic and I’m not under the impression that I’m going to drop dead in the next few years but I may deteriorate and I may end up with significant disability. How can I ask someone in their 20s to commit to that?

Since Sunday we’ve talked, a lot. I’ve asked him to leave and told him that I would understand because I don’t want to ruin his life. He gets angry at me and says that he loves me and being with me is his choice and I should respect that. I am just terrified that one day I’ll see the regret of this decision in his face.

This whole situation is just so unfair. I just wish there was a way to know how it was going to play out and what kind of life I'm going to have. Or failing that, I just wish I could stop hurting for one day and be excited about the future again.


  1. Well as far as the boyfriend and your future...none of us knows our future. Not you, not him, not anyone here on earth. God forbid but true, he could become deathly sick in an instance, hit by a car, etc. etc. Would you be by his side? I would hope so, if you truly love him. He is fortunate as he knows what he is getting. He knows your disabilities or chronic conditions and loves you all the same. You might want to consider counseling for yourself to talk with someone who does counseling for people with pain and chronic illness. And there are no guarantees for any of us. Whether you have chronic illness or not, doesn't make for a guaranteed successful marriage. That like anything else worthwhile in life takes work and alot of it. Sounds like you bo is a keeper to me. Stop pushing him away and instead welcome the love he has to offer.

  2. Hi Viki,

    If it is any help I went through these mourning stages with my diagnosis in my mid to late 20's. I did not have a boyfriend at the time of my diagnosis and I kept thinking the same things you are thinking. It would be unfair to burden anyone with this and there is no certain future to what serious disabilities will be present. I took a leap of faith on someone (my fiance) and as hard as it is and I still struggle with anger and resentment about my life sentence of RA, it does help a lot to have someone in your life that loves you. He may not understand right away but a constant open communication with him will help. Include him on doctor's visits. He will see you at your worse but if he says he wants to stay, believe me he does. I used to push my fiance away all of the time. It really upsets the male species when we do that. I had a breakdown from pain and exhaustion and have needed antidepressants and to talk with a psychiatrist to help me in the real dark days. Everyday is a struggle but like Deb said, it would help some to talk to a professional. RA and depression seem to go hand in hand. I have found my blog to help me a lot as well. So you keep being brave and if you want to be facebook friends....let me know. I'm here for you Viki.

    Take care and get rest.

  3. Thank you both. I know I'm definitely not thinking rationally at the moment, although thankfully I havent felt as down as I did last weekend again. I have and will continue to try and be a bit more open with him about how I'm feeling rather than waiting until it builds up. He does come to all of the hospital appointments and things that he can, I find it much easier when I have a second pair of ears too. I think a lot of why I'm so bad (other than the obvious pain!) is being off work for so long and therefore spending so much time on my own. Dont get me wrong, I dont feel up to going back yet, but I'm hoping when I do I'll feel a bit more like my old self. I definitely know I would be lost without him. I guess I'm lucky he doesnt scare easily x