Last week I went to Bromsgrove hospital to a Chronic Fatigue information session. I was quite worried about going as it was a group session and I suffer from bad anxiety in those situations but my friend Debs kindly took me and came in with me which helped me a great deal. Just to have someone there as support really helped. I found the session really good and felt comfortable enough to relax and take in all the information.
When the list of symptoms for Chronic Fatigue came up I recognised so many of them in the way I have been over the past 18 years. I first got fatigue after glandular fever in my late teens and have been suffering ever since and only recently got the diagnosis of CFS/ME.
Key symptoms I personally suffer from:
- Post-exertional malaise - fatigue after pushing myself too much.
- Sleep disturbance - I tend to find getting to sleep at night really hard and then wake feeling tired so therefore nap in the day. I pretty much always feel tired.
- Recurrent sore throats - I have sore throats quite often and also enlarged glands.
- Digestive disturbances - I suffer from indigestion and get cramps in the stomach often.
- Temperature disturbance - I always get hot especially at night.
The whole point of the session was for information and access to further help so we didn't really talk about our experiences but occasionally someone would open up a bit and I learnt some great ideas. I have had the illness for a long time and what I need to do is to try and control it better so that I am not spending most of the day in bed. At the moment I don't work because I don't feel reliable enough. I would love a little part time job at some point and that is my goal. So that I have my own money. At the moment I don't claim any benefits and I am lucky enough to have a lovely fiancé who supports me but my long term goal is to be able to get out and work so I can have my own money. It's not nice to have to ask Neil for money for bills let alone for things such as getting my hair cut (which I haven't had done for over a year). I love him totally and appreciate everything he does for me but I want to also have my own money and think a little job in the future would do me so much good.
So what I took from the session is that firstly I need to try to improve my sleep hygiene. My main problems is that I have an awful routine because I find it so hard to sleep at night and then I tend to nap a lot in the day. I don't know why but I have always found it easier to relax in the day. The last month has been the worst for me. I get times where I get so anxious and frustrated that I can't get to sleep at night which makes it worse. I have also been getting extremely hot at night recently even with the window open I sometimes have to turn the fan on to cool down. A bad habit I have when I can't sleep is getting my phone out and checking Facebook and Twitter. Also I continually look at the clock and then get stressed when time goes by. I need to stop doing both these things. I also need to try and set an alarm and get up at that time every day and try to reduce my naps in the day. The advice I got is to do this very gradually because my body is used to napping in the day so make small steps and that at first I will feel a bit yucky but it will get better. Some days I have been known to sleep for 20 hours a day. Too much sleep sometimes makes things worse. I think for me this is going to be quite tricky. The best way I can describe how I feel when I am feeling really tired is that I feel like my body is going to just fail and I am going to die and then I get tearful and almost like a toddler when they haven't had a nap. I just feel that if I don't have a nap I can't cope with the rest of the day and I go into melt down mode.
I also need to learn to pace myself better too. When I have a good day I tend to try and get lots done because I don't know when my next good day will be. I need to learn to rein it in a bit and save some of that energy so that I don't end up exhausted and unable to do anything the next day. This is easier said than done I am sure and overall I am a lot better than some people because I don't tend to suffer from muscular pain often so I am able to walk the dog and things like that but if I over do it I do tend to get punished the next day or a few days later and then I am in bed exhausted again.
The session was really good. I found the information really helpful and hope to take on board some of the suggestions. I have also put my name down to have an individual session to discuss my fatigue and then I am hoping to join one of the group courses to learn relaxation techniques and other ideas of how to help control my fatigue but I am hoping they will have some of these in Kidderminster later in the year as Debs can't always take me every week and as Neil and I don't drive it's not easy to get to Bromsgrove.
Overall I feel positive that I am moving forwards. For years I have been living like this without any diagnosis. I have had so many tests over the years it's good to have a formal diagnosis and to know that I can get some help to get myself back to the point I want to be where I can get a part time job and have more of a life. I think the hardest thing for me at the moment is letting friends and family down because I just don't have the energy. But overall things are looking up!Links:
The ME Association
Action for ME