DISCLAIMER: Before reading this, please note this is only what worked for me. It might not work for you but I hope you find it helpful.
We are now nine weeks into our bundle of joy and I have realised that although I have been talking about Felicity, I haven’t really done a proper full update on how I am coping. I get asked a lot of questions about my health and why I haven’t really talked about it much, except for the random pictures that I share on Instagram or on The World of One Room. There are a few reasons that I haven’t done this. The main one is, there has been a lot of change in my life and I can’t really put it down to one thing. To be honest, at first, I didn’t really know what had caused the change. It is only now, as I prepare to write my second book, that I am beginning to pin down what helped me.
Over the past five years, I have started to make some improvements. I really focussed on pacing because that is the only way I could begin to manage some of my symptoms. Otherwise, they went completely out of control and I would be incapacitated for weeks and months. I found if I stopped doing an activity before I thought I felt exhausted, it would help me to stop completely crashing.
In this time, I tried pretty much everything I could think of to try and help me improve. From acupuncture, (I really believe that this helped some of my pain), to a nutritionist, to a occupational health therapist, to a physiotherapist, to a multidisciplinary team. You name it, I tried it. There were things that did help considerably, and others that didn’t. In this time, I peaked and troughed like mad, and had some difficult setbacks. It has never been straightforward.
For me, acupuncture helped my pain. I was on a lot of medications for pain relief and I also found that when I started to come off some of them, I began to feel a little bit less drugged and out of it. The problem was that I had been put on small amounts of loads of different drugs, making it very difficult to tell which one was helping and which were causing more harm.
The nutritionist also seemed to coincide with a time I started to make some improvements. They put me on vitamins, particularly the one that did seem to make a difference was the magnesium. I also took vitamin D and I can’t remember all the other ones.
Having a multidisciplinary team, particularly an occupational health therapist and a physiotherapist was helpful. I didn’t do Graded Exercise Therapy, (I have done that in the past and it made me have such a huge setback with many months in hospital), I just tried to recondition my body a little bit. Just tiny exercises that would strengthen my body in a gentle way. Where I had been bedridden for so long, I literally didn’t have any muscles. I was all skin and bones. Although it was exhausting to exercise or move my body, it was important to do something because it all worked towards helping me to mobilise more. Sometimes, I literally lifted my head from the pillow and held it for a minute. It was as simple as that.
Before I found out that I was pregnant, I had just come out of a massive setback. I had been on a drug that was there to control my dystonia and it made me really unwell. I was back to being mainly bed bound and felt like a complete zombie all the time. I made the conscious decision to come off that drug and start coming off the others that I felt might not actually be helping me. The one thing that I did find difficult was controlling the pain I was in. A lot of it was neurological pain and the nerve pain was simply horrendous. When I came off the morphine, and the tizanidine (drug for dystonia), I felt a bit more like myself. Still poorly, but more human.
Pregnancy when suffering with M.E., generally either makes you feel a bit better because the pregnancy hormone is rushing around your body, or much worse. Thankfully for me, it meant I did start to improve. As there is such a divide in how a sufferer’s body will react to pregnancy, I did not feel in a position to say that pregnancy is the miracle cure. In all honesty, although it helped my symptoms, I still had problems with my health. I mean my body started to struggle in different ways and it was not easy by any means.
Since having Felicity, my body has continued on the same path with some improvements, but at the same time struggling. I have made some physical improvements, my stamina is at the best it has been. However, I have had five infections in the past seven weeks. Each time, I have become quite unwell. It makes a stark contrast with what I am able to manage and this makes it difficult to explain to people, because one minute I am able to do more, and the next I am barely able to do anything but lie in bed, curled up in a ball. I am told that breastfeeding can continue to give you that hormonal boost that can make people with autoimmune diseases improve a bit. I am nervous because I have now had to make the decision to stop expressing and I am just hoping that my health doesn’t go completely backwards.
I still use a wheelchair most of the time when I am outside. I am an ambulatory wheelchair user. Today, I managed to walk a few steps outside of my garden, which is incredible. I also had an accident with my leg and have now hurt my foot. Although I can move more, I still collapse quite a lot from my blood pressure dropping. I can spend more time out of my old world of one room and this makes me happy. When I do rest, I can sometimes just lie on the sofa. I am in a lot of pain, and any time I overdo it, the pain doubles. The M.E. Monster still likes to cause a lot of suffering but I have made some giants leaps into my capability.
