Dear Bug… What a Difference Six Months Makes

It has now been six months since Felicity came into the world, and what a difference those months have made to my life. It’s been challenging, difficult and rewarding all at the same time.

I spent the whole of my pregnancy panicking about how I was going to cope with a baby. I had always wanted a family, but I honestly came to the conclusion that it just wasn’t going to happen for me. For so long, I had dreamed of my future and of everything that was going to happen, but it didn’t quite play out as I imagined. I was still quite unwell, I hadn’t travelled the world and I was still living at my childhood home.

But you have to make the most of what you have, and I think that having survived the pregnancy and the first six months of Felicity’s life, my life has become enriched in ways I could not have imagined. Before Felicity came into the world, both mine and Samuel’s lives revolved around my health and needs. It had to be that way. Now I have had to learn a new way of managing my M.E., whilst managing the needs of a small baby.

When I was pregnant, no one believed that I would manage. I had midwives trying to get social workers involved and telling me how difficult it was going to be, with health visitors explained that I would need to be watched closely, to make sure I could cope. It was almost as though they had set me up to fail, and it fuelled a horrendous anxiety within me. How was I going to do this?

It came naturally, I learnt to manage my new situation in bite size pieces, resting when she rested, and between Samuel and I, we have made it work. I was told before Felicity was born that I would struggle, but very few health professionals believed in me, or helped build my confidence up.

That is not to say that it has been in any shape or form easy, it has been a massive challenge. Felicity struggled with gastro problems, and we had to spend sometime in hospital, flitting between specialists. My heart hurt to see her suffer, and to see her tiny body looking so vulnerable in the hospital cots. With support, we got through that time, and suddenly realised that Samuel and I were much stronger than we thought. Who would have thought that the chronic illness sufferer,and the mentally unwell partner would actually thrive in the challenges we faced? I don’t think even we knew that we would manage, despite our attempts to believe.

Whilst expressing, I had more of a quality of life, and I was on the smallest amount of medication i had been on in the whole of my adult life. I felt more alive, my brain more connected…basically less drugged. I saw a life that I wanted dangling in front of my eyes, it looked incredible. Then, once I stopped expressing, the symptoms of the M.E. Monster came back with vengeance. I made the decision to increase all my medications, to give me a better quality of life. I accepted that things were going to be different to what I had expected.

Felicity started to grow and flourish, she smiled, rolled over, interacted, and I found a new purpose in life. My little family. Through the suffering and agony that comes with the M.E. Monster, I felt like I still had something to hold onto, something far greater than anything that it could try and hurt me with.

New firsts seemed to constantly happen. Beautiful firsts. From being able to go outside in my wheelchair with Felicity, to seeing Father Christmas. Even though these moments take precious energy, they also give me the hope and determination. I realised that no matter how much I ‘fought’ the M.E. Monster, it would not get me better quicker, it would not mean I suffered less. In fact I found that coming to a compromise was the best thing for me.

In reality, the past six months is the first time that I have felt comfortable in a wheelchair, because I know it means I am conserving my precious energy to allow me to do more. Although I have always seen my wheelchair as freedom since I became bed bound, I was never comfortable in it. My body wasn’t able to sit or lay comfortably and I didn’t want to be in a wheelchair.

So what have I learnt six months on?

Well, don’t let anybody tell you what your capabilities are. Circumstances change. I wish I had known that. Take a moment to breathe. Look after your health. If I had realised that sooner, I know I would have had a better quality of time with Felicity. Babies aren’t stupid, and they know when you are in pain, or are generally suffering.

If you need to take medications to make sure you are in control of your pain, then take it. Being in excessive pain and not taking medication, only leads to a flare up and consequent crashes.Accept all the help you can. Sometimes when my family and friends take hold of Felicity, I just lay in bed.

Felicity being here has been more rewarding than I could ever have imagined that it could be, it’s been incredibly hard and I do feel mum guilt when I have to stay in bed, but Felicity knows me no other way.

Enjoy every second you can. Life is an incredible miracle and it changes all the time. My hope is that I can get on top of so,e of the agony that I am in. The best thing I can do is be kind to Felicity, be kind to Samuel and be kind to myself too.