The next year was a struggle for me as I tried to come to terms with my condition. After being so busy I kept trying to push myself but my body would fight back harder and I got progressively worse. I also felt immense guilt that people had to do things for me and that I constantly had to say no to people. Unable to socialise anymore I felt lonely and the wonderful, but few, visitors that came weren't able to stay for long due to me feeling so tired. Work decided that they could no longer keep me, and I found it hard to let go of a job and people I loved. I could feel my faith beginning to weaken also as I was no longer active or able to attend church. Keeping myself faithful, positive and strong became my new focus. I was fortunate as I had a family, friends and boyfriend who always understood, never pushed and were patient with my frustrations and weaknesses. They never asked if I wanted anything doing, they just did it, knowing I needed help but that it was hard for me to ask after being so independent. Whilst doing everything for me they treated me like nothing was wrong, acted as if I was well and made allowances for my condition so that I could be included in everything.
I had a few months worth of treatment from the NHS, which included pacing and cognitive behavioural therapy. I found that this stabilised my condition but didn't improve it. Then I was informed that I had completed the treatment and they would no longer be seeing me. I was confused as I was still no better, I thought they would treat me till I made improvements.
By the next year I had come to accept my limitations and work within them. Not wanting to put my life on hold I married my selfless, caring, understanding, patient husband. As one work colleague put it I was "lucky to have met someone who would put up with me" in my condition. He balanced a full time job, university degree, and looking after me and our home. Soon into our marriage the question of having children was raised. Both of us were eager to start a family, but didn't think there was a possibility due to my health. My husband came home from work one day after speaking to another sufferer of M.E/CFS who said they had vastly improved after pregnancy. There was no information on the Internet and various people we spoke to could not confirm this. We worked out the logistics, as much as we could, of how we would cope with a baby if I did not improve. But finally, the decision came down to prayer. I decided the risk would be too much to take, and prayed if the decision to not have a baby was right. That night I could not settle, I felt very emotional and something wasn't right. I began to change my mind, may be we should take the risk, we should have a baby. Immediately I felt a calming, peaceful feeling. The decision was made, we were going to try.
Thank you for sharing these experiences, Jenny. Not just people with M.E. benefit from reading your blog - I like reading it for the information I had no idea about and for the inspiring way you get through the rough spots. Keep sharing! xx
ReplyDeletethanks Heidi, i think puttingmy thoughts down is helping me too. Thanks for reading!
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