It has taken me some time to write about this as it gives me yet another label! As it has started playing up over the past few months and has become worse over the past few weeks, I think it is time I wrote about it!
A little background
I got Glandular Fever when I was 15 whilst doing my GCSE’s. It was horrid. I was due to sit my last exam which was textiles and my dad was waiting outside the school to pick me up. He took me home and that was it. I was drifting in and out of consciousness, in bed for what felt like months but was a couple of weeks. I don’t remember much but from what my mum tells me it was not a good time for me at all. Once It took me a few weeks to be able to get out of bed and do things, but I was not fully myself. Doctors took blood tests and said that they couldn’t find anything. They also prescribed me a S**T load of antibiotics which seemed to make me worse. I would do something simple like have a shower or take the dog for a walk or even watch TV and I would be exhausted from it. The long and wasted summer break came to an end and I went to fashion college. I was epically failing and trying my hardest to keep up, but my attempt seemed pathetic! I would push myself to go in to college for a couple of days and need a week off. The first few days I would be bed bound days where my mind and body just wouldn’t connect. The next few days would be spent trying to build myself back up to get back to norm but all that effort in building myself up would go down the drain from being exhausted from building myself back up. It was a vicious circle and I can honestly say that I the days I managed to get up and do things were purely from my stubborn attitude! When it came to the end of the college year, my tutor talked to me and pushed me out of college basically accusing me of being incompetent. My work was rubbish, my attendance was worse, and I just wasn’t going to keep up. She had a word with my mum at the time and said that I was a loner and needed to be going out. My mum had tried to push me to go out with friends, family, etc but didn’t know what else to do as she could see the after effect it had on me. Finally, we got a letter from the hospital explaining that they had managed to compare my recent bloods with old ones, and I had glandular fever. It took them over a year to diagnose this. They had also wrongly medicated me, and I was doing everything you are not supposed to do when you have glandular fever. The aftermath of this for me is, chronic fatigue / ME, severe reactions to antibiotics and a completely different lifestyle that I find hard to accept. Chronic fatigue was not diagnosed easily either. It took the doctors 10 years and one huge mishap to diagnose this.
After diagnisis, I found out that there is very little funding in the NHS to help people with CFS/ME. Basically, they could diagnose me with it but not treat me. They had a programme that was available to help people cope but funding was also cut for this and they stopped it. After doing some research, I decided to fund myself and get private help. I attended the Optimal Health Clinic which was a 3 day course showing us skills to help us deal better in times of need. We learnt tapping, meditiation and relaxation techniques. They worked on the mental side of how to overcome some of the habitual thinking picked up through suffering with CFS/ME and they also helped us to think differently, allowing ourselves to accept the way we feel and be okay with that. They also had a reset system where we needed to control our adrenilen. We could not react to things like getting excited, angry, upset or stressed as all these emotions release adreneline in the body. Doing this over a period of time is supposed to let the body heal itself in a slow natural way curing CFS/ME. I attended the 3 days and used some of the techniques. I also still use some of the relaxation techniques as I find them useful. However, it is not a cure and I still have a daily fight with this condition.
Things that I deal with daily are:
- Tiredness of all levels – sometimes I am just sluggish and sometimes I am exhausted.
- Talking myself out of my feelings. Most days, I set my mind to ignore pain or tiredness because if I didn’t, I wouldn’t get to do the things that I want to do.
- Swollen glands, these swell up at any sign of not feeling so good. I could eat something and they swell or be coming down with something. I could have just pushed my self too far the day before and everything swells! My glands usually swell in my throat/neck area but can swell in my pits and groin. When I am really run down the gland in my chin area can swell to what feels like the size of a golf ball.
- Aches and pains. This could be as simple as a light headache or the screams of my whole body.
- Brain fog/ blanks. I find it hard to retain too much information. When having conversations with people sometimes I can’t keep up with what is being said because it feels like my brain can’t keep up. Things can get blurry and muddled. I make a habit of noting stuff down.
- I get comments all the time from people. You look fine, there is nothing wrong with you or you should go home and be on disability benefits instead of being at work. Or people telling me to take this medication or that medication or to exercise more or less or eat certain foods. It is really infuriating when people pretend to know what I am going through and try to compare it with when they broke their finger but still ran the marathon. Comments like this get right up my a*se! What’s the need to compare? I just want to get on with me and do what I have got to do. Sorry I can’t come to your party because I am exhausted but DON’T FRIGGING MAKE COMPARISONS OUT OF ME! A bit extreme but I think its valid after 15 years of not being the same.
- Knowing that I have this condition I work extra hard so that I don’t fall behind. Turning myself in to an obsessive perfectionist that can’t settle for anything less than outstanding.
- Routines, rules and rituals. I have built up a bunch of routines, rules and rituals that help me live life. This is like a damage limitation thing. It helps me to get through the day and things that I need to do with less damage to myself. The only upsetting thing about this is that I can not longer be care free which is what my soul is!
- People think that when you have an something like this you should be bedbound. Oh, HELL NO!!! I go out, go on holidays and do all kinds of things. I just know that there will be a come back and have to deal with it at the time or be prepared to deal with it. For example, I went to Mexico and climbed one of the Mayan Pyramids on a day excursion. I had hyped myself up to do this and said I would take part in every activity not missing a thing. The next morning, I struggled to open my eyes, I was exhausted and swollen. My nephew woke up, looked at me and said to his mum… “Mimi looks like Shrek”. There are many holiday stories where I have completely ruined holidays due to this condition.
- Fear of what is around me. If someone has the flu or is sick, I avoid them as I am likely to catch it and enhance it. The amount of times I have caught the common cold and my body has decided to turn it in to something much more extreme, where I have had to be hospitalised, is unreal.
- Actually considering becoming bubble girl and hoping that this becomes the next fashion hit so that I could rock the look and not catch anything.
- Not being taken seriously and being laughed at for some of the precautions I take. I have a sense of humour and can take a joke or two. But I don’t think it is funny when someone is doing something to make my health suffer.
- A lot of employers don’t understand CFS/ME and find it difficult to understand. They think that I am being a hypochondriac, don’t care or they just can’t see it until it happens in the worst-case scenario. But by then it is too late.
- Exercise is a struggle as you have to be carful not to over exert yourself. However, having some form of daily exercise is a necessity for CFS/ME. It helps to keep the body strong and the mind clear. This year I got Zadie who makes sure that I get out at least once a day for some fresh air and a walk.
- It is important that I get enough rest at night, but my sleep is broken. I struggle to get to sleep and then am woken up usually by my own body.
The list of daily things go-on.
Do you suffer with CFS/ME or have an invisible illness? What are your coping mechanisms?
Have a wonderful Wednesday and don’t forget to look after your wellbeing!
Love & Peace xx