Slow and steady wins the race

Life whizzes by and I find myself at the end of each day shattered, heavy and sore with nothing to show for it. Having M.E/CFS gives me a valid excuse, but it doesn't make me feel any better. So, one night I  decided to make a list of all the goals I wanted to accomplish. I've learnt by now not to push myself. I accept my limitations so my goals are within my boundaries. The NHS pacing technique taught me how to do this, and its very useful to maintain my condition if I follow it. I'm going to pace how and when I accomplish my goals too. Slow and steady certainly does win the race with M.E/CFS. If I'm rushed and try to do too many things at once my body starts to weaken, the pain kicks in and my stress levels go through the roof because I know I'll be paying for it later.

I'm now a few days into my goal setting and I'm really pleased with how I've done. I can't tick all the boxes everyday, but the fact I've been able to tick any at all is a big sense of achievement for me. I feel a deep responsibility to teach my sons well, yet the free time I have to teach them is usually spent necessarily resting. One of my goals is to spare some time each day (from active time, not rest time) and dedicate it to doing one thing with them. Oh how I love this time! You just can't beat that quality time. They like the attention, and I feel like a good mum. Its wonderful to have purpose again.

The day after the night before

'its times like these that create memories' my husband profoundly exclaimed last night as we ate cookies and reminisced at the time that I would usually be snoozing in my bed. I'd been child free  for five minutes and as much as I knew I needed sleep I wanted to enjoy being 'free'. I knew I'd have to pay a penalty for making that choice, but the wise words of my husband are true. Bodies can recover, lost time can't be recovered.
My body will always tell me when I have stayed up too late, so being unable to fight it any longer I went to bed an hour later, just in time for my youngest to wake again needing a feed. Lucas wakes every 2-3 hours for a feed and around 5:30-6 am ish he will struggle with wind. If I go to sleep around 10pm I can cope, especially if I pad myself with pillows and sleep when Lucas feeds (which is a necessity for me to get sufficient rest). When I go to bed later, like last night, it makes life difficult. Today I am struggling to function. I am so heavy and weak, that I have to take a rest when I get to the top of the stairs. My chores are taking triple the time they usually take, and that's saying something as I'm usually slow. Because I feel so exhausted I'm impatient and get annoyed with loud noises or children being in my face. I'm constantly telling myself that I can handle it, keep calm. The house is a tip due to unfinished jobs and I don't have the energy to care. After 4 and a half years of having this condition I still don't cope with having bad days well.
So the jobs will remain undone, my lovely husband will probably finish them after work tonight. I will use what little energy I have on the kids and look forward to an early night tonight, thanks to football on the tv :)

Here we go again

My second pregnancy hit me hard. Sickness, anaemia and a toddler do not mix well. It was hard to distinguish whether what I was feeling was a symptom of pregnancy or CFS/ME. The pregnancy bloom wasn't as apparent in my second pregnancy. This was probably due to exhausting myself trying to entertain and tire out my son everyday. I did have the bloom though, as I was able to do more with my son than previously possible. I worried that after my pregnancy my condition would deteriorate again, but my Perrin practitioner said that I was doing so well in my recovery that if I deteriorated it would not be back to where I was before treatment. This knowledge was a big relief. The last trimester of pregnancy was hard as I was much bigger so struggled to carry the extra weight, and I experienced all the uncomfortable aches and pains that are common in the latter stage of pregnancy. I was ready to not be pregnant any more, yet worried about how I would manage with two young children.

 Sooner than expected, my second son was on his way. After 4 hours of regular contractions my body began to weaken. As I walked upstairs to the bathroom I could feel my legs getting heavier and I started to  panic. If my body was feeling like this now how would it cope when the proper contractions kicked in? I rang the hospital and explained my condition. As expected they were reluctant to let me go. I was in no mood to be ignored so we drove down to the hospital. At the hospital my contractions were getting stronger, my body was getting weaker and I was panicking. My husband had to find a nurse to examine me. She did and told me I wasn't far enough along for them to do anything. I was very weak and felt as heavy as lead. I told the nurse that I either had to have an epidural to allow my body some rest, or I would be forced to have a cesarean section because I was not strong enough to give birth.  She went to find a doctor. After 30 mins the doctor came. Within that time the proper contractions had started and my body shook uncontrollably with each one. Between contractions I was left feeling lifeless. I didn't know what was happening with my body and I was very scared. The doctor told me they would keep an eye on me, but do nothing for the moment. My husband demanded they examine me as my contractions had been so strong. I was so fortunate to have someone to fight my corner as I was not in a fit state to do so. Sure enough, when examined I was much more advanced. She finally agreed to move me to a ward and give me an epidural. The epidural had a wonderful relaxing effect. I was very worn out and weak, and tried to use the time to rest so I could have enough strength to give birth. Lucas took his time coming and the doctors worried that I would need a cesarean section to get him out. Fortunately, he was eventually ready to come, not without some hard work on my part though. He required lots of pushing, which was extremely taxing on  my body. I was blessed with the strength to endure it and our baby boy arrived safe and sound, welcomed by happy tears from mummy and daddy.

After birth it took me a while to recover. My blood pressure shot through the roof and I was very sick. The doctors expressed concern, but I knew all I needed was sufficient time to rest and recover. The staff were good in allowing me that time and Lucas slept the whole time, so I slept and rested regardless of the noise on the ward and by the next day I was suitably recovered to go home(another blessing), although it would take at least a week to gain my strength back. We were then a family of four.
And so resumes the blog of how we manage!

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The Perrin Technique

I will not be able to adequately describe the Perrin Technique, so here is the link to the website.

www.theperrinclinic.com

In my experience this works. They do not claim that it works for everyone, but it certainly works for me. They give you twelve weeks in which you should know if it will work or not and this was true in my case. I could tell strongly that the treatment was having an effect on my body. My practitioner gave me a diet plan that also helped to improve my energy. It was a very strict diet which cuts out toxins. Among some of the forbidden foods were dairy, sugar, gluten and starch. Each week she would discuss different psychological techniques to help me through the journey of recovery. After being ill for so long I had to retrain my brain to think healthily, and not to do a constant body check of how I was feeling. We would also discuss my progress and as my abilities increased she would help me overcome my fears of doing things again. I had been so incapable and so dependant, that to do things on my own  was really frightening, and still can be. Another hard part of recovery is being able to say yes, but still having to say no - to prioritise what to spend my energies on. Talking it out with my practitioner, herself a former sufferer of M.E, helped me to prioritise and not feel guilty. Alongside the treatment, my practitioner emphasised the importance of proper rest. Having sufficient resting periods is not easy as all parents can testify. I was taught to close my mind to stressful thoughts and think back to when I was well so that when my kids nap I can restore some of the lost energy.

I've still a long way to go, but I have come a long way, and a big part of that is thanks to this treatment.


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A Pause for Thought

Contrary to what I wrote in my previous post, I will not be writing about the Perrin Technique today. I thought I'd have an interval before I resumed the posts about my past.
I love my kids, but BOY is it hard work. Lucas is nearly 4 months old now and I'm feeling that same deterioration in energy as I did with Asher. The thought keeps coming to my mind to stop breastfeeding. However, this makes me so sad. I was, and am, so determined to breastfeed till 6 months this time as I am doing better than I was when I just had the one child. Now though I have a very active toddler AND a baby that can't go longer than 3-4 hours without a feed (day and night) and requires a lot of attention because of reflux. My body is suffering. Then I think to myself that breast feeding is not only best for our family, but I enjoy the time I have with Lucas. A wise friend once said that there are times and seasons. With Lucas possibly being our last child I think this season may be a struggle, but I will look back and be grateful I made the sacrifice.

Motherhood: A New Challenge

That first week after we brought our baby home was wonderful. The sleepless nights were novelty, and who could begrudge such a precious little bundle. My body was fatigued, but I had my husband at home to do everything so I could rest and sleep well. My mum had also taken that week off to relieve my husband of some of the burden. After the week my husband and mum went back to work and I was left alone. Not only did I feel inadequate and unprepared to look after a baby, my son did not sleep during the day. I used to rock him, to no avail. Often he would cry and nothing I did could soothe him. He would sleep at night but wake every three hours and feed for an hour at night. I broke down in tears through sheer exhaustion. My sister would come and take Asher while I slept, which helped give me some energy, and sanity. I was, and still am, amazed at how well my body endured under those circumstances. I previously wouldn't have thought I was capable to withstand such conditions, but I did.

When Asher turned three months he became easier and started to nap in the day, and cry a lot less. I was able to get him in a nap and sleep routine and he slept longer in the night without feeds. This enabled me to feel much better. My energy levels improved and I found the nappy changing, bathing, feeding, carrying easier to do.

Around four months after birth I could feel my energy levels deteriorating and my M.E/CFS becoming worse. After talking it over with my husband and praying, I made the hard decision of stopping breastfeeding and giving Asher a bottle. We did this as breastfeeding requires lots of energy from a woman, and also so my husband could take over the night feeds allowing me more sleep.  Although this helped, I realised that as Asher became more mobile he would need me to become more mobile. I needed to find something that would help me get better. I searched the internet and found a few techniques that claimed they may be able to cure my condition. I didn't know which to choose, but eventually I found one called the Perrin Technique that made sense to me and felt right, After speaking to the practitioner I felt excited. Treatment began and it went as predicted and I started to feel better. Gradually I was able to do more. My son started crawling then walking and it would take all my energy trying to keep up with such an active child, but I managed thanks to the treatment I was having. (My next post will be dedicated to the treatment).

 A year after our first was born, with me feeling so well and a prognosis of being cured after two years, we decided to try for another baby. We wanted Asher to have a sibling, and a friend. It was another big decision, but this time it was easier to make, knowing what having a child entailed.

Pregnancy

The first four months of pregnancy were hard. M.E/CFS and "morning" sickness ensured I remained in bed for the majority of the time and I wondered how people could ever have more than one child. Then the morning sickness went and  I experienced a surge in energy that the baby books predict, calling it a "bloom", but not all women experience it. My capacity to do things didnt increase a great deal, but to me it was wonderful. I was able to sit up for longer and spend more time with people, and I felt the joy that every woman must feel when the months of constant nausea pass. My bump was very small and so I didn't experience any of the usual aches, pains and inconveniences like most do in their final trimester. I did waddle though, not because of my bump, but because of my condition. My dad joked that it was the first time since becoming ill that I could say I was normal because I walked like a normal heavily pregnant woman. It was a lovely feeling to think that nobody would look and wonder what was wrong with me.
The midwives were understanding about my condition, but they didn't know much about it, especially in regards to pregnancy and birth. I was referred to a consultant and told I could not have my baby at a midwife led unit. After one visit with the consultant it was concluded that there was no need to  see her anymore unless there was a problem. My pregnancy went well, and nobody knew what effect birth would have on my body, so it was decided we would take it as it came. The only thing they stipulated was I had to wear special socks to stop blood clots due to me being immobile for long lengths of time.
not knowing what to expect from birth I tried to make a birth plan as best as I could. I wanted a natural, water birth so as to avoid the  need for pain relief.
My contractions came ever hour for 5 days before real labour kicked in. They weren't too painful but enough to wake me every hour. On the 6th day they started to come every 10 minutes. I didn't think much of it, but my dad (who we were visiting) had been timing my contractions and told my husband he'd better take me home. The contractions came every 7 -10 minutes and became stronger in intensity. For the next 12 hours I was doubled over in pain, unable to speak through each contraction, but the hospital refused to let me go to them as my contractions weren't close enough. After 12 hours I couldn't stand it any longer and so I demanded that they see me. Fortunately, I was far enough along for them to keep me in. The contractions were intense, but still no closer and for the next 5 hours they offered me gas and air telling me I  had done so well I could do it without anything else. My body was shutting down and I got scared. I told my husband I didn't think I could carry on. We asked for an epidural and they complied with my wish once I told them of my condition, as they weren't previously aware. The epidural relaxed my body and enabled me to get some well needed rest. 6 hours after the epidural the contractions started to get stronger again and I could feel pressure, the baby was coming. I informed the midwives each time I had a contraction and they told me when and how to push. Within three pushes I had my baby in my arms. There is no feeling in the world like it, and no words to describe the feeling you get holding your own brand new baby. The birth was a wonderful, joyful, pain free experience and I recovered very quickly from the epidural and was moved down to the ward shortly after. Through speaking to the midwife I later learned that they had not read my notes prior  to birth, and so had no idea of my condition, this would have concerned me had the birth not been straight forward.
Post birth I found the after care wasn't very good. I had little strength left to do anything, a new born baby to care for and no support. My husband was only allowed to visit for a few hours of the day and then I was left to care for myself and baby. I just about managed it only due to the fact that my son slept mostly and only woke for feeding. Since I had decided to breastfeed I did not have to leave my bed. Yet I longed to go home and be a family of three.



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Adjusting

The next year was a struggle for me as I tried to come to terms with my condition. After being so busy I kept trying to push myself but my body would fight back harder and I got progressively worse. I also felt immense guilt that people had to do things for me and that I constantly had to say no to people. Unable to socialise anymore I felt lonely and the wonderful, but few, visitors that came weren't able to stay for long due to me feeling so tired. Work decided that they could no longer keep me, and I found it hard to let go of a job and people I loved. I could feel my faith beginning to weaken also as I was no longer active or able to attend church. Keeping myself faithful, positive and strong became my new focus. I was fortunate as I had a family, friends and boyfriend who always understood, never pushed and were patient with my frustrations and weaknesses. They never asked if I wanted anything doing, they just did it, knowing I needed help but that it was hard for me to ask after being so independent. Whilst doing everything for me they treated me like nothing was wrong, acted as if I was well and made allowances for my condition so that I could be included in everything.
I had a few months worth of treatment from the NHS, which included pacing and cognitive behavioural therapy. I found that this stabilised my condition but didn't improve it. Then I was informed that I had completed the treatment and they would no longer be seeing me. I was confused as I was still no better, I thought they would treat me till I made improvements.
By the next year I had come to accept my limitations and work within them. Not wanting to put my life on hold I married my selfless, caring, understanding, patient husband. As one work colleague put it I was "lucky to have met someone who would put up with me" in my condition. He balanced a full time job, university degree, and looking after me and our home. Soon into our marriage the question of having children was raised. Both of us were eager to start a family, but didn't think there was a possibility due to my health. My husband came home from work one day after speaking to another sufferer of M.E/CFS who said they had vastly improved after pregnancy. There was no information on the Internet and various people we spoke to could not confirm this. We worked out the logistics, as much as we could, of how we would cope with a baby if I did not improve. But finally, the decision came down to prayer. I decided the risk would be too much to take, and prayed if the decision to not have a baby was right. That night I could not settle, I felt very emotional and something wasn't right. I began to change my mind, may be we should take the risk, we should have a baby. Immediately I felt a calming, peaceful feeling. The decision was made, we were going to try.

A new world

I managed to get to the outskirts of Chorley before I realised that it would be dangerous for me to go any further. My head felt heavy and it was a chore to hold it up, I was unable to concentrate and my reactions were scarily slow. My body ached everywhere as if I had the flu and all my limbs were heavy proving a struggle each time I needed to use them. After five days of resting and still not feeling any better I went to the doctors. I was petrified of what they might say as I had never felt so ill before. They took blood tests and explained it was a virus that was going round at the time. The blood tests came back and I was low in iron. I was relieved. I had been anaemic before and iron tablets had restored my energy. Believing anaemia was all I had I attempted to resume normal living and decided to go for a walk as it was a lovely day. As I stepped outside, the brightness hurt and my head started to ache. As I walked my body got heavier and it felt like I was wading in water. Three houses down there were kids playing in the garden, screaming and laughing. I couldn't stand the noise, I turned and went back to the house. Later that day I felt in such pain and walking had become even harder. I just had to lie down. It was even difficult to concentrate on watching the tv or talking to people. This was what life became for me. I also struggled to sleep. I would be awake for hours at night, desperately needing rest, but unable to get it. Numerous blood tests came back clear, so I went to the hospital to have more tests done, only for them to come back clear too. A friend mentioned M.E to me, and so I researched the condition and became fearful. The symptoms described what I was feeling,yet people were saying they had it for years. No, I did not want it be M.E. More doctors appointments, more tests, and they all came back clear. Luckily I had a family and a doctor who believed me and were supportive, or I would have felt crazy, guilty and would have pushed myself even further. After 6 months my doctor could finally diagnose me as my symptoms had not improved. She diagnosed me with M.E/CFS, and by that point I was so grateful to have a diagnosis that I no longer cared. It was a weight off my shoulders that I had a name for what I was feeling, and had come to accept the fact that I was in this for the long haul.

Back to the beginning ..

It has been kindly suggested that I write about my background, so the next few posts will be a brief overview of the past 5 years.

I thought my life before M.E/CFS was a productive and fulfilled life. Looking back I see that I was burning the candle at both ends, and it proved detrimental to my health. I loved exercising and would wake half an hour early and go to bed 20 minutes later to do toning exercises. I would spend half an hour jogging on the days I didn't have to go to meetings after work. I would park the car further than I needed to be to walk the rest of the distance, and go for walks in the evenings around the beautiful hilly countryside with my mum. Weekend's were for church socials and parties and I loved to dance, my cousins, sister and I would be the first on the dance floor and the last to leave.
I worked 9-5 in a job I loved. I was a support worker for the mentally ill and I found satisfaction in being able to assist those who struggled doing the shopping, cleaning,  getting to appointments, going out for fun, and being there as a shoulder to cry on.
I was very active in my church and had responsibilities that would see me at midweek and Sunday meetings, making phone calls, typing minutes and other administrative work throughout the week.
Every night I would be out at church meetings or socially and not retiring to my bed till nearly midnight.

I loved my life, but around January 2007 my body started to give me warning signals. I became very tired and had to come home from work on one occasion for no other reason than I just needed to sleep and rest, which was very unusual for me. One Monday night in early February of that same year I wrote in my journal "I feel I'm getting ill, I hope not, I'm too busy to be ill."
The next day I set off in my car ready for work, but I never made it.

Lazing on a sunny afternoon

My body tingles with pain, my legs are heavy, my head aches .. It's been a great day! We took advantage of the unusually warm autumn weather and spent the afternoon in the garden because since having M.E/CFS my body thrives in warmth, and hates the cold. Warmth makes me feel relaxed and eases the pain I feel, which is a welcome relief. A good excuse to move to sunnier climates I say! In the days when I was really bad I was unable to regulate my body temperature, which meant that although my body liked the warm, it could not tolerate hot without feeling dizzy, weak and nauseous and in the cold I would shiver uncontrollably. When I have done too much I still experience that now, although with each pregnancy I have made improvements and the boundary which lets me know I have overdone it is now higher.
My boys also napped at the same time today for 50 minutes, every time they do that it feels like Christmas. I need my naps in the day whether I want one or not, and today I really wanted one after only 5 and half hours sleep. I don't know what I run on when I get little sleep. At one point I would not have been able to function. I think the difference is that now my body rests when I sleep, whereas previously in my "bad days" I would feel just as bad in the morning as I did the night before. This is mainly due to the treatment I had prior to the birth of my second baby, called the Perrin Technique. (I will elaborate more on this treatment in a future post).
The reason why I'm so exhausted tonight is not just the warm, fresh air. I couldn't resist my two year olds cheeky face as he wanted me to help him race cars around the garden, exploring and holding my chunky baby at the same time so he could be part of it too. My two boys, happy together are worth feeling this way. Fortunately, I have an understanding  husband who values the time I spend with my boys and is now tidying the messy house as I type. A good support system, be it family or friends, is key to having a life as well as M.E/CFS.