Normality

Brain and nerves
1

Hi,

I know this condition varies so much, but I was wondering if many of you experience periods where your body functions normally and you are able to travel or take part in sport? Or even spend time socialising without payback for days later? 

I have had this condition for about 8 months now, and although there has been some improvement from the beginning (which I am very grateful for), the thought of remaining like this scares me. 

I've had a few occasions where I thought I was over the worst of it, but then I get worse again. I realise this is the nature of the illness, but I was just hoping to find some stories of hope! Thank you for reading :-)

2

Hi Emma,

I have had chronic ftigue for about the same time as you, and also have improved gradually since the beginning. I would say in my case it is quite mild, and I have been able to keep working, though mostly struggling and also having quite a lot of time off. As I work in a FE college, luckily we have frequent holidays off, and of course a long summer break, and this has helped enormously. So has having an understanding boss.

However, on the days when I feel more normal, it is so tempting to do a bit more in the joy of having more energy, that I invariably get worse again. And generally that is just after a small increase in activities, not a full day. So I too will be reading this thread in the hope of success stories.

I do know of one person who got CFS around ten years ago, she had to give up her job and move back with her family, but is now completely well, She says she used pacing, and also a course of homeopathic treatment which her family paid for as it was expensive. She still has bad days and sometimes need to take a day off work, especially when she is overtired or has a cold or something, but I would say she has made a very good recovery, although it that took her several years.

Take care.

Jean

3

well im 20 years in and have seen prety much everything it can throw at you I have bad relapses ever 3 - 4 years and it usually takes approx 12months to get back to somewhere near normal. Im never without symptoms, they just become less obvious and bother me less over time. I had the worse relapse last year that i have ever had, it also threw alot of new sypmtoms at me too which was very scary. I have to say i thought at the time i would never get better again and was in despair, but a year down the line now and im pretty much OK. doing most things.. shopping, looking after my grandson whos 3. Walking my dog, doing the gardening and decorating. Yes at times it bites me on the behind big time and i have to slow down.. but you do learn to live with it. Crazy thing about this condition is you cant really plan. You can go to bed feeling great,then wake the next day feeling like you have been run over a few times. There is no ryme or reason to it.. so to be honest ive stopped trying to figure it out. It comes and goes as it pleases   Hormones do make the sypmtoms worse , i see a definate increase in all my symptoms at certains times of the month.  Its a tough road ... but there is hope Eat well, a little bit of exercise so you dont totally cease up, stay postive and ocupied and you will get through it. As hard as it is.. belive me there are much worse things to be afflicted with

4

Hi Jean,

Thank you for your reply it's great to hear you have good days, along with understanding people around you. I'm definitely the same in that on the good days I maybe do too much and suffer afterwards, but I think it's those days where I haven't done anything over exerting and yet I feel dreadful that I don't understand!

That definitely gives me some hope that you know someone who did recover, I think if there are good periods along with the bad I would cope better. Before I got this I was planning to do the Inca trail-maybe one day

Hope you contine to recover, and enjoy the summer holidays!

5

Thank you for replying, you are right that there are a lot worse things out there. I am quite positive for the most part and really grateful for the blessings that I have, but when I relapse I start to lose hope!

What first triggered your illness? It's really good to hear that you do have periods of being OK! My nephew is 4, and spending 30 minutes with him completely wipes me out! The fact that you can do all those activities at the moment really does give me hope. I think at the moment I'm really scared that I won't ever be independent again, I'm 33 and have had to move back in with my parents-they are so lovely, but I don't want to end up being a burden to them!

I'm definitely learning that plans don't go well as the illness can be so unpredictable, you seem to have a really positive outlook

Thank you for all your advice You have given me some hope

6

The trigger for my illness was almost dying when having my son. I had fulminating Preeclampsia.. It usually kills as it comes on within hours rather than the standard Preeclampsia.  I was told at the time i was very lucky to be alive and would probably have kidney issues and fits for the rest of my life  Hearing that with a premature newborn and a 6 year old at home about killed me itself...haha  But my kidneys improved.. and i only get mini fits.. just means i kind of go offline for 30 seconds or so.. its a bit weird but ive gotten used to it The main thing it left me with is the M.E.  Being unable to function with a baby and a small child in the house and family too far away to help. It was a nightmare. But some how i managed to bring up my kids.. they are now 27 and 21 and i have a 3 year old grandson too. I have him 2 afternoons a week for about 5 hrs.  Its hard when im having a bad day, but i just change what we do to fit how im feeling  The only way to go with this condition is slow and steady.  If you allow it.. it will take away your life.  I think thats why so many doctors think there is a mental component to it, when in fact there isnt. It just robs your body of the energy to do anything and with that goes the will to try.  Its taken me 20 years to learn to live with it.  The only way i get good periods is by not allowing it to win. I constantly push mysellf do do a bit more, and a bit more. Yes it hurts like hell but  you have to learn how much is too much. That takes time trial and error.  Just set yourself little goals.. thats how i did it. Expect failure and set backs and dont let them grind you down. Not easy i know but its the only way. Correct nutrition is vital!!! Supplements etc. try and cram your body with as much unprocessed food as you can. M.E. causes an immune response in most people which in turn causes allergies. This means most things that are chemical dont agree with us and that goes for additives in food and the stuff we put on our skin and hair.  Ive just purchased a heppa air filter for my bedroom and i cant tell you what a difference its made to my sleeping. Its amazing. Clearly the allergies have gotten so bad over the years that ive ended up with acute rhinitis as well as others. This meant a constant blocked nose, no sense of smell etc. The lack of clear airways and mucus on my lungs where clearly keeping me awake and making me wake in the night.  There are so many things you can do to help yourself Pacing is important.. do a bit rest a bit.. do a bit more. That way you still get stuff done and dont feel like its taken everything. Have faith in yourself.. your body can actually do more than you think. It will complain and moan... haha but it can do it.

7

Hi Emma, I understand how you feel, my story seems very similar. I get better for a little while, enjoy it to the full and then it gets worse. That is even when I do try to take breaks and rest enough even when I feel relatively 'well'

But my friend has recovered and several others have improved, so I take it I just need to learn to be very patient with myself and not expect miracles, rather taking 1 step at a time. What aggravates my condition most is any emotional upheavals - negative or positive. So I work on maintaining calmness as much as it is with this condition humanly possible :-) The most important - Don't give up, thing often get better in time ;-)

8

That's a great reply - thanks! I agre 100% about allergies and chemicals, and getting the very best nutrition you can. Haven't tried air filter for sleeping better but it makes sense. And anything that makes you sleep better has got to help with the fatigue.

9

Thanx for being so candid. What you wrote is so true!! The setting of realistic goals, good nutrition, not giving up, just keep going, slow and steady just as you said. By the way, well-done for managing this and raising your children and looking after grankids. Great job!!!

10

Hi Emma,

your question is very interesting, and for a long while I wondered about it myself. I mean, how can I sometimes keep on without crashing for a week or longer while I'm normally ill after just a bit of exercise like walking briskly home from a bus stop. This was until my doctor pointed out the typical pattern in milder forms of CFS, where you can keep on exercising and socialising for a while, for example, during holidays, and then you crash the next day after coming home, or after starting working. Even in these cases it is exercise/activity that provokes the crashing, but in high spirits away from home/worries you'l be able to keep going longer than usual. Eventually your body reaches the limit, and activity takes its toll.

Does this kind of pattern sound familiar to you? 

11

Hi, I find the nutrition thing so incredibly difficult. My trouble is that I start the week with good intentions - no processed food, lower carbs, higher protein etc. but even as early Tuesday or Wednesday I am too exhausted to cook! Even the simplest of meals fills me with dread! And it's so frustrating because I love cooking! So we either end up getting a takeaway or eating something like tortellini or something that takes 3 or 4 minutes in a pan. Does anyone else have this problem and what do you do? 

I know some people will say 'get your husband to cook the evening meal', but to be honest, he works very hard all day (I sometimes have to come home from work and sleep), he does plenty around the house (ironing, DIY etc.) and he can't really cook, so I don't feel that it's fair to put that pressure on him.

12

Hi Ajkulka, it's good to hear that you have a friend who recovered! Did they offer you any good advice? I have a pretty healthy diet (lots of fruit and veg, avoiding processed food), I take SO many supplements, and have been getting acupuncture - I'm definitely improved from 6 months ago, but I am still pretty debilitated But hearing that people do recover gives me hope!!!!

13

Thank you, you definitely have some good advice! I think I'm doing everything right, in that I eat a healthy diet and take a truck load of supplements! It really annoys me how some people think the illness has a mental componant to it - it obviously does affect your moods - but that isn't the cause for it!!! I'm pretty positive (apart from when the illness really gets to me when I relapse!) and before getting this condition, I was in a pretty good place! Thanks again for your help, sounds like you're doing a wonderful job of dealing with this

14

Hi Avocado, I haven't had a full week of feeling ok, but if I pace I can function for maybe 4-5 hours a day, and I've become aware of moments of feeling great (those normally lasy about 5 minutes!). I've recently taken on a part-time job and find after being there for 4 hours, that's me done for the day - I return home and lie on the sofa for the rest of the day. Weekends I sometimes meet up with friends, and again I'm fine for a few hours. I did go for a pub meal a couple of weeks ago and actually stayed out until 9.30pm - but I was really bad for about 3 days after. I miss exercise so much!!! Do you work? Do you have 'normal' weeks and then crash?

15

Hi Nacho, do you work full time? I've been pretty good with my nutrition, I've always been a bit of a health freak! It's definitely more difficult on some days to cook a proper meal, and I have resorted to toast! I'm lucky that I have moved back in with my parents, so on the days that I really can't function my mum will cook. Also with it being summer, salads have been quite simple to put together!

I think as long as you are getting a few good meals in a week it's a start, and if you take supplements too. How long have you had this condition for? Do you know what caused it?

16

Hi Emma, I am so sorry to hear you still feel debilitated even after so much effort. I know how frustrating this is. Me too, I have spent a lot of money on naturopathic treatments, diagnostics, supplements, acupuncture, osteopathy..... and also feel only a small improvement. In fact, sometimes it can the the supplements themselves that our body reacts to, because they often contain hatmful chemicals such as titanium dioxide, etc... and because many of those with cfs/me/fms also have a multiple chemical sensitivity, they really do have sometimes very adverse reactions to many things including many supplements.

Regarding acupuncture - it was helping me befor my cfs/me got worse, as it would help me to sort of level my emotions, but lately I had to stop, as I started to have adverse reactions even to the acupuncture. Instead of helping me, it actualy made me feel even worse!!

I am now taking every day Aloe Vera gel LR (FLP company is also quite good quality aloe). ALso I take Enterosgel daily (another rather expensive thing) - enterosorbent

My friend has recovered and now is back to her full-time job, but is still cautious of not to over-exert herself.

She said her GP gave her advice to divide a day in 3 8-hours lasting  parts. When you do some more difficult activity in 1 part, then you are supposed to give yourself a rest for the 2 other 8hours parts.

She says it helped her. However, she did not have a very serious condition - her symptoms we mild to moderate only.

My symptoms are moderate to very severe, so for me this advice is not very helpful, as I need to do my pacing a bit different. - I take a shower, and rest, have a breakfast and rest, often rest even during having a breakfast as often even chewing or raising my hand with the spoon towards my mouth is painfully exhausting. (not always that bad though)

What worked for me the most was to leave London UK where I have spent almost 9years of my life, and I have moved to a small quiet town.

What I find very important is to become aware of any forms of my own denial as to the seriousness of my condition which leads me to over-exertion and then terrible crash.

Also I have to learn to be more patient with myself, to adjust my own attitude, find ways in which I can still be useful to others, to be able to appreciate things I still CAN do and not to cry over the things I can't do any more.

Feeding my spirituality is the most important thing to me - it makes me strong inside and more resillient.

All the best to you, things often improve over the time. Even if not our health condition, but at least our own attitude towards it can change to more helpful.

Never lose hope!!! ;-)

 

17

Emma: Yes, I still work, but with difficulty. After a full day's work I struggle to stay up and often need to go to bed; all cleaning etc. has to be on the weekend. 

Like yourself I can't function properly for a full week (except when I got a honey bee sting - I felt completely healthy and energetic for a full month) - there always needs to be days of rest in between. Sometimes the rest days fall on the weekend, but often it's mid-week, so I feel this can't continue for very long. And if I don't actually crash, mere lack of sleep and accumulation of sleepless nights force me to stay home every now and then.

I hope to get an appointment with an infection specialist soon - those who have received immunoglobulins say they are the most effective treatment for ME/CFS, but the treatment very very expensive... Anyway I believe affordable treatment will be available some day.

 

18

Hi Emma

Firstly I want to reasure you that I do know people who lead a relatively normal life. Unfortunately the whole family of illnesses (FMS, CFS, ME etc) are for life. There are coping strategies that you can learn so that you can create a new life.

After first being diagnosed I felt that my life was over. Of course this wasn't the case. Everyone who has that will to survive will adapt. Please don't misunderstand me I am not saying you will necessarily lead the life you used to but you will be able to have one.

At the moment it will probably seem incredibly daunting. As you can see by the mirriad of responses to your post you are not alone. There are many people around with one or more illnesses from this family who remember what it's like at the beginning.

Try starting off small. Pick a task you want to accomplish and break that down into smaller components. After each component is completed decide whether you can go on and do the next part. E.g. Washing up can be broken down into the individual items that need washing or larger sections such as type of item (mugs etc). It goes without saying that the bigger the task the longer it will take to complete. SO BE PATIENT WITH YOURSELF. LOL.

Give yourself permission to rest. You are not going to be able to keep going all day. You do need to rest, and I mean rest. I often made the mistake of thinking that because I was sat down I was resting. In truth I would be doing something else, mentally or physically. This doesn't let your nervous system have a break.

Try to make sure you do something nice for yourself every day. Even if its as simple as listening to some of your favourite music. When you don't you will probably find that you become deflated. The better your mental state the better equipped to deal with your symptoms.

I do hope this has been of some use. Learning to live with any condition is difficult but remember to turn to your support network when you need to. There is never any shame in asking for help when you need it.

Take care of yourself.

Helen

xx

 

19

That's interesting about the bee sting, it's a shame your impovement didn't last longer than a month - but I wonder if there could be something in the bee sting.

I've not heard of immunoglbulins treatment before, but will do some research. If you do go down that route, please let us all know how it goes. Hopefully an affordable treatment will be available sooner rather that later! Thanks again for your comments, all the best.

 

20

Thank you Ajkulka, that was a really helpful message. I had never considerd how toxic the supplements might be - I take so many, I could be doing more harm than good! I'm going to look into more natural ones.

Sorry to hear that your symptoms can be so severe, it sounds like you are coping so well with it all. I think the attitude adjustment is something I struggle with. I am positive most of the time, but when the symptoms become more severe I just lose hope! A lot of it is denial over how bad it is, and again with acceptance - I accept for a while, then hit a point a being fed up, then start again!

Spirituality is something that I have been trying to practice, and it definitely helps to a degree. Thank you for sharing your friend's story and your positivity