The profile of the month is chosen by the MSIF editor. The April Profile is Géraldine.

Géraldine

Writing a “profile of the month“ is something that fills me with ambiguous feelings. I do want to write it but I know it is going to make me look back on some very dark moments of my life, which are not so far away. In fact, I can still see myself clearly: depressed, terrified, crying by myself, feeling lost in what seemed to me like an abyss. So there I was, in my mid-thirties, crying like a kid, calling for my mum and asking why, why me. I was scared and I believed that I had no more future, especially as a woman.

How strange things go, I now feel quite serene about this episode of my life. But don’t think that I feel strong; I am far from being a strong person. Neither am I sure of having the right attitude sometimes. For example: I get myself worried by listening too much to my body, I think too much about what future could be like if I were to get worse. Therefore I end up by being unable at times to enjoy this good year of stable health.

I cannot tell you that I have gone through what Sandy calls “a grief process” in his profile or maybe I am going through it right now. I know there is no coming back, I know I have to adapt my life (I have already!) and I know it is some kind of continuous process. Still, it does not make it easier on you sometimes.


My first symptoms came to me while I was teaching French as a foreign language in a difficult comprehensive school in England. A tumultuous river of ants would come running down my right arm and each time I would bend my head. I put it down to my being tired, stressed or unhappy. I also put it down to a trapped nerve so I went to see an osteopath, which helped.

These symptoms disappeared after a while and I forgot all about it. But what remained was my being tired physically and mentally. As a teacher I thought I was finished for I had cracked up and I didn’t feel like helping a few verbally aggressive pupils any more. I refused a promotion; I just wanted to go home because I knew something was wrong with me. But don’t get me wrong; I really enjoyed my time in England.



Going back to France was the best thing I could have done at that time. I really needed to get closer to my family. In England I didn’t know the medical system so well. In France I knew where to go, who to speak to, what I was entitled to, what the different forms to fill in looked like. It was not an extra stress.

I went back to France end of July1997 and found a new job in November of the same year. Life seemed to be back on track but the following summer I experienced the “marshmallow legs” symptoms, I thought: “here goes my trapped nerve again!” The specialist that I consulted for my cervical vertebrae problems sent me to see a neurologist because there was apparently something wrong with my cerebellum Even though there was something weird about it (a malformation of Arnold Chiari); it had nothing to do with my symptoms.

The neurologist that I consulted ran the usual tests but found nothing conclusive even on the MRI. He just told me that I seemed to have an inflammation of the myelin. I found the whole explanation complicated and not very reassuring. He asked me to do a second MRI three months later, which I did and that is when panic struck! The radiologist who compared the two MRIs asked me out of the blue if I had ever heard of MS. Just imagined how I felt! It was as though the earth had suddenly come to a stop. As a result I came home worried to death.
I was hospitalised three days later. The lumbar puncture came back positive but still no mention of MS. Anyway, I was afraid of hearing that terrifying word being linked to me again. As for the neurologist, he was just waiting for a confirmation.

Fourteen months later it came. I had double vision for the second time (plus leg problems); that is when my neurologist told me that maybe it was time to start a treatment. Inflammation of the myelin had officially become MS. Strangely enough, it was a relief, things were clearer. In fact it was not a surprise. Looking back I realise that a sentence written in a letter exchanged between my neurologist and my general doctor could not have been more explicit.

Three months later I started Rebif and six more months later I had to stop this treatment. I had become very depressed, as I mentioned at the beginning. I just could not do the injections any more. I would stare at the syringe for several minutes, unable to do anything but cry. During those six months I kept on working full time until I felt exhausted. At the time I even refused to stop working and rest when advised to by my doctors.

I still look onto this moment as the most terrifying moment of my life but I am happy now, mostly thanks to my boyfriend Martial who is such a great support. I met him while I already knew that I suffered from inflammation of the myelin and I told him right away when I was officially diagnosed. He has had his moments of fear and doubt but has always been there for me.

Well, as I have told you, I feel happy now, I am much better in my head and body. This positive process started when I finally accepted the fact that I was sick that I had the right to slow down, take care of myself, do things that were good for me and be with people that were good for me too.

On a good day I can do whatever I have to do in the morning and then I take a nap in the afternoon. If I don’t, well I’m transformed into a “zombie” in the evening. On a bad day I feel exhausted. Feeling so drained can be very frustrating. Being unable to do what I used to can still make me angry with myself. I also worry about my boyfriend who has to provide for both of us, even though I receive a small pension from the French NHS. Recently I have also started worrying about going back to work one day. It seems that I do nothing but to worry on those days!

Anyway, having an invisible handicap is not always easy to deal with (I hope it is going to stay invisible). Relationships with people can lead to some misunderstanding. When people tell me that it could be worse I tell myself that is impossible for them to know what is going on inside my body. But sometimes it can make me mad. What’s more I still don’t understand how “sick” persons can always have a strong positive attitude. Maybe I am just jealous and angry at my weakness.

I realise that feeling depressed can make you feel worse than the symptoms of MS themselves (This is just a personal view based on what happened to me). But as I have told you, happy is how I would describe myself. Martial and I are thinking of having a baby; the neurologist says it is okay. I just hope everything will be alright so if you have been pregnant after being diagnosed, please let me know. Thanks.

Take care.

Géraldine

I am aware that this is not the Oscars’ ceremony but still I would like to thank Martial for loving me so much. Thanks also to those who contacted me on the MSIF website, it has been very helpful.