My Experience Of M.E. (Post Viral Fatigue)

 

Either scroll down the whole page or click on these links to go to particular sections!

Introduction

What has helped me?

Advice to Others

Positive Aspects of my Illness

My M.E. Diary

Useful Links and addresses

 

 

Introduction

Before I caught the Flu in September 2002, I never sat still and thrived on being busy both at work and at home.  I do not know how long it will take me to recover fully but I feel I have reached a stage when I am managing my illness a little better.  I realise that I have not reached the physical lows that some sufferers have to contend with, but I have written this section in the hope that it will offer some support to others.

I have found alternative treatments very helpful (as detailed below) and think that traditional Chinese treatments with their emphasis on the symptoms rather than concentrating on the label of M.E. are particularly helpful. I am extremely grateful that I already knew my acupuncturist and osteopath before this started as I feel sure that I would not have made this much progress without them.

I do not feel qualified to write about the medical background to the illness, but I do  want simply to present my experiences in the hope that they will help others in the way that Peter Maggs' account on the SupportME website helped me.

In addition, I would recommend the Action for ME site as a place to go for sensible, and seemingly unbiased, information about the condition and so have included a link on my M.E. Links page accessed via the bottom of this page. This charity provides invaluable support and information about the condition.

Caroline Crocker

June 2003

 

What has helped me?

Acupuncture - Kevin Robins has helped me tremendously, both with treatments and his continued support and encouragement. Thanks also to Maria for her friendship.

Cranial Osteopathy - Mary Bolingbroke's treatment was gentle enough for even my weakest times and kept me on an upward trend for many months . Her help and support was brilliant. Since her move to Cornwall, I have been lucky to receive equally excellent treatment from Bridgit Mckay.

Traditional Chinese Herbs - Michael Potter's prescriptions really seemed to get things moving and continue to help me now. I would recommend this treatment to anyone.

Aromatherapy - I have only dabbled with this at home but found it extremely helpful, particularly for relieving joint pains.

Mozart - is meant to have healing qualities and helped me at my worst points (despite the fact I don't normally listen to classical music).

A supportive GP - Dr Ames has been patient and supportive.

The support and kindness of family, friends and colleagues.

Keeping in contact with people through e-mail, phone calls, letters and visits.

Finding creative  and rewarding things to do without pushing myself too far.

Learning to find pleasure in just  sitting and watching, especially in the garden. (Thank you to Linda Germain for suggesting I sit and look out at the birds and trees!) At last I have tried out all the garden seats I have gathered over the years!

Advice to Others 

Pace yourself (and sleep if you have to).
Follow the 50% rule. (Do half of what you think you can do!)
Keep in touch with friends.
Investigate alternative therapies.
Make a list or mind map of positive ideas to look at when you get down.

Eat well if you can! (Daverick Leggett's book "Recipes for Self-Healing"  ISBN: 0-9524640-2-0 is excellent).

Don't punish yourself for feeling sad at times. It is frustrating!

Keep smiling (at least some of the time).

Positive Aspects of my Illness:


(With thanks to Peter Maggs whose similar list on SupportME  really inspired me.)

Sheldon (my solo duckling) and her 7 siblings.

More time to spend with family members.

Getting to know several friends better and making new friends.
Time for my cats.
Time to appreciate my ducks.
Time to watch my garden grow and learn more about plants.
The chance to start a garden journal.
Learning to write a website.
Rediscovering drawing.
Learning to be more patient. (I'm still working on this one!)

 

 

My M.E. Diary

 

The Beginning

On around 28th September 2002, I noticed I had a sore throat and then the flu symptoms developed. I had a week off work with this but when I attempted to go to work on the next Monday, I was sent home after 20 minutes as I was so weak I couldn’t keep my head up. I was aching and weepy.

 

October 2002

 I spent most days asleep, still sleeping all night as well, in this first month. If David hadn't brought me breakfast each day I wouldn't have had any as I easily slept until midday most days (This was from a person who can almost never lie in beyond 8 am). I would struggle to get myself lunch and then sleep again from 2 to 4pm before having a few hours awake, sitting on the sofa,  in the evening.

I was breathless on slight exertion and had alternate fevers and chills. I did, however, force myself to send work in to school all through this month.  I wanted to be in control as I fully expected to be going back soon  and really believed I was, until the weeks slipped passed and I was just as weak.

In the end Sarah, my Head of Department, said I had to stop trying to work and concentrate on getting well. (Her continuing support  and friendship - and that of Mike and Becky M - has helped me cope with being away from work.) Despite everyone's support, at this point I felt isolated , helpless and guilty for letting colleagues and students down. There was an awful lot of weeping at this time, which I felt (and still feel) I had no control over.

 
November 2002

I was still sleeping much more than normal and still had a very stiff neck which I couldn't turn without considerable discomfort.  General aching and fatigue continued. It was a particularly frustrating time as I felt I wasn't ill enough to be off and yet couldn't stand or walk around for long enough to consider going back.

Walking up the garden made me breathless and I had to rest at the top before coming back. Emptying the dishwasher, or putting a load of washing in, were tasks that had to be built up to and I needed to rest afterwards. I would sit down whilst waiting for the kettle to boil, sit down at the dining table to peel vegetables and had to be careful to avoid going upstairs if possible. (Even now -June 2003- it is not a good idea to go up stairs or up the garden more than once in a half hour slot.)

Reading became difficult as my concentration wasn't good. I really shouldn't have done anything but I continued to drive myself to treatments and used up any energy I got through this by trying to be helpful round the house.

By the end of this month, my sleep patterns were in a terrible mess. I wasn't sleeping in the daytime but I couldn't sleep at night either. In the end, I only broke this cycle by using a self-hypnosis tape a friend lent me. (I was very sceptical but would now highly recommend it.)

 
December 2002

During December, I seemed to get gradually stronger and had started walking round the block most days and was able to drive myself about locally with no obvious repercussions. I was tidying out cupboards and moving about a fair bit at home. I still had to rest after half an hour or so of movement, but was able to keep going gently for at least some of each day.

I liked to prepare the evening meals again and did so by keeping to very quick, simple meals or by preparing parts of the meal in short five minute bursts during the day.

I discovered internet shopping and did much of the Christmas shopping from my chair!

I decided that I would go back to work in January and so tried to prove to myself I was well enough by inviting family members round for meals, getting Mum and David to take me to the sales and, it seems obvious now, generally doing too much. I also caught a tummy bug at this time which may have played a part in the slip in my condition in January.

All this time, I was pushing through pain which should have been my warning to slow down. I started to look well at this time which was actually very frustrating as I felt terrible. The pain, tiredness and fatigue was like nothing I had ever experienced and consequently very difficult to describe.

 
January 2003

In the first week or so of January my aches became much more painful and the lack of energy much worse again. The hot fever-like flushes died down during this month and when these fevers subsided so did my clingy, emotional state. It was a relief to feel more like my old self but frustrating that improvements were so slow.

At this time, I had had all the blood tests my GP could think of and was sent to see a consultant haematologist at Derriford hospital. He said that I had Post Viral Fatigue/ ME.

At the end of this month, I reached the lowest point of all and started, for the first time, to feel a strange gloom and depression coming over me. It was at this time that I found the M.E. Forum on the Internet. In fact, I never got so far as using the forum itself because I read Peter Maggs' experiences and decided that I was going to help myself. In particular, his notion of "beneficial aspects" of the illness really made me think. What could I say I had learnt? Was I going to just look on the months I had spent ill as  a waste of time or could I turn it into a positive experience? At this point I was mostly confined to the sofa as I tired so quickly. For example, I would spend hours thinking about and building up to going to the kitchen for a drink when I was thirsty. Even sitting talking to someone was enough to totally wear me out. Despite this, I decided to draw a mind map of things I could try to do. I also realised that I should try to keep in touch with everyone I knew and drew another mind map of names. After all, life goes on at such a fast pace when you are well. It wasn't that people didn't think of keeping in touch, just that they were busy. (Special thanks to Mike and Glynis who always seem to find time!) I hadn't had the energy to sit at the computer for long in the early stages of the illness but now I started to e-mail people and wrote to others. It worked. I felt much less isolated.

I decided to create a Garden Journal. (Something I had meant to do for years.) I also started drawing again after a twelve year gap and found huge satisfaction in it.

It was at about this time that I asked David to stop letting the ducks and hens out in the morning as it gave me something to aim for. By the time I had been up the garden, I knew whether I had the strength to potter about the house that day or if I needed to sit very still! It also meant that I could take the digital camera with me and start to record the garden again which I hadn't done since I fell ill.

 

February 2003

During February, I was a little stronger but my joints and muscles were very painful and the tearing sensations and pains in my knees were particularly difficult to ignore. I had a great deal of deep, heavy pain and stiffness in my hips (particularly when I moved about too much) and a different sort of ache in my muscles after exertion (e.g. in my arms from drawing).

The overwhelming fatigue of the early months had reduced but was still present as a general lack of energy and heaviness. If, however, I did move about more I was susceptible to a sudden and unpredictable exhaustion which I learnt not to push beyond.

The sore throat which had persisted since September still came and went at this stage and was of varying severity.

My appetite (which hadn’t been a problem before January) became very variable and I suffered from nausea. My sleep patterns were still quite disturbed at this point although I rarely needed to sleep in the day at that time.

At Kevin's suggestion, I started seeing a herbalist and taking traditional Chinese herbs this month. Within a couple of weeks the change in my energy was amazing and, despite some low days, I have continued on a general upward trend since then.

 

March 2003

During March, the extreme frailty, which made it  feel an effort to walk or even sit up properly, eased. I no longer felt like an invalid although the fatigue was still present along with painful joints. I still found it hard to get moving in the morning with painful joints making me moan out loud as I tried to turn over in bed.

It was around this time that I stopped driving as I realised that I was spending several days recovering from short journeys (Like climbing stairs, driving just uses too many muscles and too much mental energy. The worst thing is that you can't stop as soon as you feel you should which is essential -I think - for controlling this illness).

 

April 2003

I continued to improve during this month but, as well as joint pains, the most noticeable symptom was the tendency for me to suddenly run out of energy (as if some had pulled the plug). This persists even now, but at that stage was particularly dramatic. Perhaps it was not that the lows were worse but simply that the contrast made it seem that way. As I had more little bursts of energy, the exhaustion seemed more extreme.

I had some much better days, though, where these periods of exhaustion didn't set in until the evening. I had finally learnt to keep to short bursts of standing or walking. Something mum had read months before, about five minutes of activity followed by five minutes of rest, seemed very useful now ( although I had rejected it previously as I found it hard to accept that I was really that ill!)

By now, it was possible to pace myself to such an extent that I could do things I really wanted to do (like visiting a garden, I had wanted to go to for years, on my 30th birthday) providing I sat down frequently and accepted that I would have to sleep in the daytime for several days afterwards to enable my energy levels to creep back up.

 

May 2003 Things continued in much the same vein in May. Deep pains in my knees and hips tend to act as warning signs and I find that sometimes a huge and overwhelming sleepiness comes over me in the daytime and, even if I desperately want to stay awake to do something, I have learnt not to resist it. The sleep that follows is so deep that I feel very strange when I wake- perhaps it is a necessary part of the healing process!

My duckling, Sheldon, hatched on the 12th! Although I don't have the energy to entertain her for more than half an hour or so at a time, she is great fun and raising a duckling is something I have wanted to do for years so I am very excited!

 

June 2003 I have noticed that I have to be very careful what I plan to do. If I try to do too much or ,for example, go out to more than one or two shops (chauffeur driven, and often dropped near the door, by David or Mum of course) I can usually push through the pain but I always pay for it afterwards, or the next day, with a total exhaustion which makes me feel so desperate that I often find I burst into tears. This frustration is short-lived these days as I have trained myself to think of the positives and either sleep or find something to do sitting down until the worst of it passes. Mostly, though, I am pacing myself successfully. I am desperate to be better so I can go back to work in September and do the things I really miss like proper gardening and T'ai Chi but I know that taking each day as it comes is the best option at the moment.   I have bad days and better days but, although progress is slow, I am definitely on a general upward trend.

If people come round to see me (and I really need them to for me not to feel isolated) I must appear quite lively and "normal" but when they go I invariably collapse and sit very still for an hour or so before continuing with my move a bit, rest a bit strategy. It is easy to feel frustrated but I have to keep reminding myself that I now have the energy to walk up the garden with them, to play with Sheldon for half an hour or to stand while waiting for the kettle to make them a cup of tea, without totally exhausting myself.

 

July 2003 Unfortunately, a few days after writing the June section, I woke up one morning feeling much, much worse. There was no particular reason for it and such relapses are particularly hard to take. If I have tried to go somewhere or do something more energetic than normal, I know to expect trouble, but to be worse for no reason is tough!

Suddenly, going up the garden and going upstairs were things to be considered much more carefully again. I decided I would have to get David to let the ducks out each morning again so that, on better days, I could wander up in my own time later to see Sheldon. Even going up once can set my joints off. If my hips and or knees seize up, it is painful and exhausting - meaning that I have to sit very still or, sometimes, when the pain is intense, sleep it off for a few hours.

My website has expanded rapidly in the last month or so. It is something I can do sitting down that uses relatively little energy and is very rewarding. I have been getting e-mails from duck keepers across the world. It is fun to chat with them  and I feel much less isolated when I am in touch with people during the day! I am also given a real boost when people sign my guestbook.

I have had a few harder weeks recently but was starting to pick up again. I then chose to go out for lunch at someone's house and met up with friends, some of whom I hadn't seen for 10 months. I was tired but felt better than expected and so attended a second get together that evening. Again, I felt ok whilst I was there but later that night the pain increased and by the next morning I was feeling incredibly weak and suffered a fair bit. I didn't stand up much at either house, so it must have been the energy involved in sitting chatting to people that has exhausted me. I don't regret going because I wanted to see people and I enjoyed myself but I know I will have to pace myself for a week or so to get back on track.

A few days on, even a visit to the doctor for which my dad dropped me at the door of the surgery, was too much for me today. I hold myself together when I have to go somewhere, but the pain has intensified since this morning and even a three hour sleep hasn't done the trick!

Oh well, I did manage to sit outside with the ducklings for a while earlier. (Luckily the other ducks brought themselves down to the house because I don't think I could have gone to see them today!) I will content myself with some sitting down things for a few days. I know it will pass again and get back to a bearable level and, as my husband keeps reminding me, if I ignore these bad patches, the overall trend in my condition still seems to be an upward one!

 

August 2003 By early August, I was strong enough to let the ducks out every morning and still managed to get back to the top of the garden later in the day to spend some "quality" time with them!

My days became busier as I had the strength for more little household chores and even managed to water my patio plants properly myself for the first time in almost a year.

I found that if I kept movement or standing to about 10 minute bursts, I could achieve more. The general pattern at this time was that I could do much more during most days but, by the evening, the pain in my knees and hips was so intense that it would make me sit still. If the pain built up during the day, an hour of complete rest- sometimes even sleep if the pain was particularly great- was often enough to ease the problem.

We had a holiday cottage booked so we decided to go and see how I was. The same principle of short bursts of activity worked well and we had a lovely week. I joked that  I could bring out a book called "The Benches of Gloucestershire" since that was how I managed to go out and about, sitting briefly at almost every bench we passed. The energy I usually spent on visiting my ducks at the top of the garden was used to go a duck farm and waterfowl centre- amongst other things!

I made two great new friends in August which has really given me a boost. Firstly, I found an e-mail friend and fellow duck owner, Nancy, who lives in California. We have lots in common and enjoy a good gossip. It is another example of the good that has come from this difficult time. Secondly, my doctor introduced me to another M.E sufferer, Isobel, who lives just a couple of roads away. We get together each week if we are well enough and it is so good to talk to someone who understands exactly how I feel.

With my husband and dad both being teachers and having friends who work in school too, the summer holiday was a good time for company. The sunny weather also meant I could spend lots of time with the ducklings as they got used to their lives outside in the garden.

The joint pains were not particularly improved by the good weather- in fact the hottest days were often the worst- but being able to take a rest in the sunshine with ducks clambering over me was certainly a bonus.

 

September 2003 I found it difficult to sit at home and watch as people went back to work. Of course, I missed the company but, more than that, I wanted to be well enough to start the new term myself. The anniversary of my illness beginning was a tough point too but I soon realised that positive thinking was the way forward. My school are keeping my post open for a year and the best thing I can do for myself is to keep positive and just enjoy what I can of each day. I threw myself into my website, my ducks and enjoyed e-mailing Nancy. The weather remained good and I was able to do little bursts of "sit down" gardening with my trusty cushions.

Analysing this illness constantly doesn't work. It is unpredictable and has peaks and troughs whatever I do. The hardest thing is to keep to a steady pace because I do get more energy at times and I get tempted to do too much. I am pleased that, recently, I have mostly avoided the extremes of the boom and bust pattern that you can easily fall into with this illness. I am getting better at reading the signs and stopping before I exhaust myself.

By the end of September, even I could see I was stronger than I was a couple of months before. I had also put on a stone in weight with the help of the Chinese herbs strengthening my digestive system (something I needed to do and had been trying to do for a couple of years.)

 

October 2003 I am still having cranial osteopathy and taking traditional Chinese herbs and overall my condition is improving. I now accept that I have to go with this condition. If you fight it, by carrying on whatever your physical symptoms or energy levels, it just gets worse and stops you in your tracks. Pacing yourself and "going with it" is the ONLY way forward. I get up no later than 8 a.m. every day (helped by having ducks quacking to be let out) even if I feel like lead. Occasionally, I have to give up and go back to bed mid-morning, or in the afternoon if the overpowering sleepiness takes over, but mostly I can keep going at a steady pace. I never sleep for more than an hour or so in the daytime and aim not to at all.

I find that my limbs are often very heavy in the morning so I take this into account with my routine. After I let the ducks out, I often start the morning by e-mailing Nancy, and other friends, or working on the site and then try to move about more as the day goes on. I always have in mind what I would like to do, whether it be gentle household chores or duck duties but if my condition is worse than expected, I will just adapt these ideas and take it easy.

I enjoy Isobel's company and, although I don't drive at the moment because it is physically too draining, we get together once a week. Other friends pop in too and David and I have been to friends' houses for dinner on several occasions. It is good to have the strength for "sitting down" socialising without suffering the next day. Phone calls are not usually tiring anymore either.

On days when I have a medical appointment, or other pre-planned event, I can usually find the strength to cope and I don't always suffer afterwards as I used to. I have to be careful where I go though. Sometimes I insist on tagging along with David to the supermarket (just to get out of the house and do something "normal") but such places don't have benches and I usually land up on my feet for too long. As well as joint pains, this extended walking or standing results in a strange weaknesses and sometimes nausea. The good thing is that it reminds me why I am being careful and makes it easier to be good for a few days.

I also find that sitting still for too long is not helpful either so, when I am hurting, I try moving about a bit to see if that is what is needed. I had a few weeks with much less pain and, although it is worse again at the moment, it gives me more hope for a return to full health.

I am determined to stay positive and have started drawing again which is a very rewarding way to make me sit still. I have also resolved to make sure I get some fresh air every day even as the weather pulls in.

Despite the bad days, I am definitely getting stronger and Mum has said that I move about more normally now, whereas for months every step looked an effort and I hadn't the strength to hold myself up easily. On good days, I can sometimes keep going all day, pacing myself but not having to stop totally in the evening. Sometimes, I find I have walked up the garden briskly or nipped up the stairs. I usually feel it afterwards and slow down, but just the fact it happens at all is a sign of progress.

 

November 2003 This was a difficult time with an Incapacity Benefit form to fill in which I found both physically and mentally exhausting. My arms were very painful after all the writing involved and it required me to focus on my illness and explain my symptoms in detail. As my usual tactic is to keep positive and think of nicer things, such a focus on my condition was very depressing.

Pains in my knees and hips continued and a short walk to and from the doctors was enough to leave me with flu-like symptoms. I had to sleep for an hour or so in the afternoons quite often and nausea and headaches were an increasing problem as the month went on.

I started some abstract painting work this month which was a very positive step. I also heard from someone who teaches at the same college as me. Alison and I have a mutual interest in arty things and I am happy to have gained yet another friend through this time.

I was beginning to do much more this month but at the same time pain and tiredness levels were high.

 

December 2003 Lead like limbs and tiredness marked the start of the month with my knees often very painful and heat pads needed to relieve some of the symptoms.

My new cranial osteopath, Bridgit McKay, tried a new treatment based on the ethmoid bone in my nose. I felt a wave of energy move throughout my body during this treatment and the strength I gained in my legs has never left me since.

The next day was a very heavy healing day but the next few were strange because I had a huge burst of energy and was very restless despite the fact that it meant very painful limbs. By about the fifth day, I still felt energetic but was physically weak. After another few days, I began to really feel the benefit of the treatment and was definitely at a new level of energy.

I was happy to  be able to survive more little trips out (driven to the door) to one or two shops at a time and to visit family and friends locally. Most trips resulted in very painful knees and hips but my energy was lasting much more effectively. I was able to put up my Christmas decorations slowly over a period of about a week and was SO EXCITED to be able to go out on December 19th for a pub meal with David to celebrate fourteen years together.

By the 22nd I was very bad again with stomach pains, awfully painful knees, general aches and heaviness and nausea. A couple of more restful days meant I was feeling much better by Christmas Day and we had a lovely time visiting David's parents in the morning and celebrating with Christmas dinner at mum and dad's.

We had friends and family round for visits and meals for the next few days and by New Year's Eve I was strong enough to cook David a three course meal all by myself!

 

January 2004 Our socialising continued into the first week of the New Year and I seemed to be coping with it by sleeping when I needed to in the daytimes and making sure I didn't stand for longer than about 15 minutes at any time. Despite that, painful knees were a big problem at this time.

I had to spend a lot of time sitting down again by the middle of the month so I used the time to write my page "Handy Hints for Raising Ducklings" for the website as well as updating the cats' web pages.

With more strength, however, I found I could cook much more interesting meals for tea and I really began to enjoy my cooking. 

At this time, I tried to introduce new elements to my day including timetabled rest and activity slots but I found my condition was too variable for this to work. One thing that has stayed from this new routine is that I now eat my breakfast at the table in the breakfast room every morning. I still need cushions to sit on dining chairs but I have found that I can manage to sit there each morning instead of heading straight for the soft sofa. I have also cut down on the amount of time I have the TV on in the background when I am on the laptop in the sitting room. I have bought a "round-the-neck timer" too to help me time periods of activity and try to stop me sitting for too long at one time. With the addition of fish oil liquid each day (thought to help this condition) as well, you can see that I am still trying to find new ways to help speed my journey through this.

My activity and energy levels remained much higher than a couple of months before but I needed more afternoon naps and had to contend with fairly consistent pain in my knees and hips. Headaches were a big problem by the end of the month so Bridigt worked on my ethmoid bone again and a period of greater energy followed for a few days as before.

 

February 2004 A week of heaviness and a need for more daytime sleeping followed this but I felt it was a real time of healing for my body again.

One sign of a greater level of energy than a few months ago was the fact that I could now cope with an evening visit to mum and dad's each Tuesday evening while David was tutoring a student nearby. It was only a case of sitting watching TV there instead of here, but just managing to get out and about more in the car was a very good sign. Especially when you consider I was also coping with a visit to or from Isobel each week, an appointment with the cranial osteopath and the odd trip to a little shop or garden centre.

In addition, I was able to get out into the garden more often. I have let the ducks out ,myself every morning since August and quite often now I am able to get up there during the day and put them to bed in the evening. I was delighted to be able to do a bit of light gardening for about twenty to thirty  minutes on a few days. A huge step forward particularly as it didn't wipe me out for the rest of the day.

My diary for this time looks very busy by comparison to a couple of months previously. Nothing amazing, mostly a few little household chores and little trips out in the car with David (even a trip into the city centre with him) but it seems that often I had the energy to carry on all day with bursts of activity and rest and not suffer completely the next day.

I have realised too that I now sometimes have periods of time without painful joints- only hours usually but it is a relief not to be in constant pain.

 

March 2004 This has been a busy month. It started with a visit to my former workplace to meet the new Principal and discuss my job. It is clear now that I am not going to be strong enough for full-time teaching in September 2004 (when my sabbatical ends) but she has very kindly offered to hold my teaching post open until September 2005 to allow me to focus on my health and recovery.

I experienced a restless energy again and had days doing lots of cooking and even little bits of cleaning! Very painful knees and hips were usually the result but rest usually eased it a bit.

A trip to an NHS physiotherapist  proved to be one thing too much and it took me days to recover fully. I have since decided to try the exercises he offered but at my own pace at home. We will see how that goes!

March has been an exciting time for the website, though, with contact from a Hawaiian duckling and many other people writing for advice as duckling season gets underway. This is a big help in boosting my spirits.

Nancy (in America) and Isobel continue to be great sources of strength for me as do David and my family. I have found, though, that I seem to be in a cycle of boom and bust which I know I should avoid but seem unable to resist. My general level of activity has improved and  I get bursts of energy and try to do too much and then have times of less movement and much more pain as a result. It is infuriating but perhaps understandable.

When your every activity has been so restricted for so long, the realisation that you can do a bit of hoovering or go for a short walk or something without feeling too ill is just too tempting. I get particularly frustrated in the weak times now as I have had a taste of a less restricted existence. Each time I overdo things, I tell myself I won't make that mistake again, but pacing is so very difficult that I expect I will!

The end of March has been a time for long daytime sleeps and a very heavy lethargy which I find myself resenting. I try to sit in the garden whenever the sun comes out and, now the ducks are allowed out into the main garden, they give me plenty to smile about as I watch them from the house.

I know I am much stronger, in many ways, than I was in November  and I have vague plans to try some Chi Gong at home and to try some of the exercises the physio has recommended. At the moment, however, my energy is too varied for me to manage a definite routine and I continue to try to "go with" the condition and hope for continued progress.

 

April - December 2004

 

 

 

 

 

 

 

Apologies to anyone expecting to find individual monthly diaries for this period.

In April 2004, I fell pregnant. This was a planned pregnancy after David and I decided that to put off starting a family because I was ill was silly- especially since there is some suggestion that pregnancy can help ME sufferers to overcome the condition. (Theories as to why usually revolve around the hormonal and immune system changes of pregnancy.)

I fell pregnant almost instantly (at least my reproductive system was still in working order!) and for a few weeks thought I had been miraculously cured of most of my ME symptoms. (Presumably this was due to the initial surge of pregnancy hormones.) Then came the usual complaints of pregnancy...in my case including about 18 weeks of nausea and I soon realised that keeping this journal of my symptoms would be pointless as it became harder to separate what was a result of the pregnancy and which of the ME symptoms remained.

Well, at 37 weeks pregnant (and making a concerted effort to update all aspects of my site before chaos descends our household) I thought I would quickly review my pregnancy experience. I have continued to have both cranial osteopathy and Chinese herbal medicines (albeit ones aimed at strengthening my body for the pregnancy) through out and undoubtedly these have helped me. I have continued to make progress and, even in these later more uncomfortable weeks of heavy pregnancy, often have much more energy than before I conceived.

My main ME symptoms - the joint pains and the restriction on my walking/ standing capabilities seemed to improve greatly for a time during the middle months, but have returned in full force along with the coccyx pain that was such a feature prior to the pregnancy too. How much of this is due to the considerable extra weight I am carrying, and how much to the tendency to try to do more as I have greater energy, is unclear. Recent weeks have brought a bit of a dip in my strength but this is apparently to be expected in anyone at this time. I do recognise some off the terrible heaviness in my joints as a definite ME sign but beyond that, I will have to wait until after the birth to see what progress, if any, is permanent.

The birth itself is a concern, of course, as it is an exhausting experience for anyone -without the added restrictions of ME. Also, the early weeks and months of parenthood which (by all reports) are also totally draining, will no doubt prove an interesting time in terms of my condition.

I have  no regrets at this stage, however. My health has continued to improve, if slowly, throughout the last 8 months. Whether this is despite of or, in part at least, because of the pregnancy, I am proud to have survived the extra physical strain so well. (With the unfaltering support of David and the rest of my family and friends of course.) It feels fantastically positive that, unlike other aspects of my life, we haven't had to put this particular adventure on hold because of the ME.

My priority after the birth will be to aim to breastfeed baby and to try to hold on to my recovery by resting whenever I can. Who knows when I will have the time or energy to update this again...but I will be back eventually with news of little one and of my condition!

 

 

Update March 2007

 

 

 

 

I really did intend to get back to this journal before now. Readers of my ducky diaries will know that baby Jess arrived, 15 days early, on 14th December 2004.

For six weeks, despite the early exhaustion of parenthood, I seemed to be symptom free as far as the ME went. However, after that time, I suddenly awoke one morning with an uneasy sensation and recognised the heaviness of limbs and realised that symptoms I had almost forgotten were back! It was a huge blow as, although David and I had tried not to get our hopes up, we inevitably had and, as symptoms crept back in, it was hard not to be disappointed.

HOWEVER, I was now coping with a small baby and blissfully happy as a mum. I was STRONGER than pre-pregnancy. One way I coped was that I slept when she did and, two years on, after following her nap patterns through three a day, to two and now one, 1 and a 1/2  to 2 hour, nap, we still cuddle up together in the double bed every day for our sleep. It is frustrating when we miss out on things because of having only half a day to get out and about but, overall, I regard it as precious time together, especially now we wake to a cosy story session afterwards. Jess is a very confident, affectionate child, sensitive to my feelings and able to ask, "What's wrong, mum? How are you feeling?" She is a wonderful source of fun and my illness has probably given her much more quality time with her mum than if we'd been busy, out and about all the time, had I been well.

When Jess was about six months old, David and I realised that the steady, if slow, progress we were used to seeing in my ME had stopped and, although the cranial osteopathy I received brought pain relief and a stability to the condition - bringing me back to where I had been if I hit a bad patch- I needed a further boost.

Another mum at baby massage recommended a homeopath and I saw her for about a year with very pleasing results. As I improved and reached a new plateau, it was difficult to justify the cost at a time (Jess was approaching 18 months) when my body was going through the changes of giving up breastfeeding. Pregnancy number two followed within two months and, again, I decided it was too much a time of flux to be trying to treat an underlying chronic condition. I now have four weeks until Baby Bump, as Jess has named her sibling, is due and I am seriously thinking of resuming the homeopathy once life with the new baby settles down. For now, I am grateful to my cranial osteopath for brilliant treatments at home throughout the pregnancy and have been surprised that I have coped as well as I have with it, especially with a toddler to care for.

Like many this winter, I have had a string of colds, tummy upsets and sinus conditions. When these hit, it really knocks my ME symptoms and takes me a couple of weeks or more to get going again. Also, since reaching the last months, I have had more coccyx pain and fatigue which is part pregnancy and part Me I think.

About a year ago, I began driving again as I still find walking any useful distance- especially if slopes are involved- very difficult and tend to suffer for too long as a result. I needed to get out and about with Jess and have found that, with lifts from friends and family on a couple of days a week, I am able to drive very short distances on two or three of the other weekdays without suffering too badly. It really opened up our possibilities and gave me a sense of independence I'd long missed.

 For that time, Jess and I have been attending two or three toddler groups a week, become part of a lovely group of mums and toddler friends and had little "adventures" together five minutes drive away on other mornings to friends' houses, charity shops and, as madam suggested the other day, "to the café" for a treat! I have to keep a balance still, and can easily overdo things if I hit a "good" patch and try to do more than one "thing" in a day too often

Late pregnancy, and bugs, have slowed me down lately but perhaps that is not such a bad thing as Jess and I have enjoyed each other's company at home and will have to get used to it for at least a few weeks after baby comes while we settle (I hope) into a new routine.

I am very anxious about how I will cope with two children and my illness but, with the ongoing support of my husband, David, and the rest of the family, I am sure we will find a way. I was stubbornly determined that Jess was going to have a brother or sister and I am sure baby will bring as much joy as she has and make our family complete.

I'd dearly love to be able to run and dance and play with Jess in some of her more active games. I daydream about longs walks in the countryside (or the town come to that!) and being able to drive wherever I fancy going - no matter how far - or even being able to go up our sloping garden each day  BUT, I still maintain that this illness has brought so many positives - many opportunities for friendships such as those long- distance ones with Nancy and Helene, and my lasting one with Scottish deserter Isobel, a chance to revaluate what is important in life and, most of all, the opportunity to be  full time mum -  which is the single most amazing thing I have ever done.

Jess, now 2 years old, and I have moved from Baby Signing to dabbling with French (revising rusty GCSE standard, and so keeping brain cells alive, in my case and surprisingly successful and fun for Miss). She is also showing a delightful interest in the garden and arty hobbies I love and so, once we have got baby Bump through the first two years, I am hopeful that, as the children get more able to do everyday things for themselves, I'll be able to get stronger and have more energy for the garden and the ducks- whatever the state of my ME by then.

 

  To be continued...

My babies in 2009 (aged 4 and 2!)

I'd love to hear from other sufferers. Send me your comments, questions or advice!       

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