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ME & Fibromyalgia blog

Personal stories, advice and support from people with M.E./chronic fatigue syndrome and fibromyalgia
  • It has been ahile again since my last blog . Over the winter this year I had to give up hosting my regular fibro support meetings and let down my ladies as I just could not cope with organising an event. This laid heavily on me my heart. My benefit from DLA went down and I was forced to look for another job to supplement my lack of income as my overdraft could no longer support me and my debts were piling up. I managed to sell my motability chair after self funding for it originally with no other option costing me almost £3000 , I sold it to someone else like me who I had met through group who was forced to self fund for £600 and felt pretty good about helping a fellow sufferer out. I got a job working 8 hours a week as a visual merchandiser but found that I was to ill to juggle looking after my children, the household chores and do the additional 8 hours so I reduced them to just 1 hour a day 3 days a week, which is all my body could take. I continued working with my temporary contract with the charity shop too but became overwhelemd and despite bringing my Aspergers son and my Bi polar husband in as volunteers to help through the day I still found it very challenging. My contract has now finished and I have lost a further 8 hours paid work  and cannot find another job that suits my current health and feel totally vunerable.

     

    Then to add to my anxiety, stress and tearfulness of frustration at what seems like an ongoing battle to be normal I heard about the industrial grade silicone implants and alarm bells began to ring. I called my private clinic ( in 2004 they did my surgery  after 15 years of breastfeeding my 5 children -  I had lost a lot of weight after my 5th child, my husband had a vasectomy and the surgery would make me feel more comfortable inside my own body. After a year of research and a lot of risk analysis and being assured that these were top of the line implants PIPS I chose to have my breasts totally reconstructed , upifting would not be enough, my areola and nipples had to be moved and trimmed down and a lot of mishapen breast tissue had to be cut away so the surgeon suggested that a small implant would make all the difference so I made a decision to have them. I was sold a dream at the time and am now living a nightmare)

      I have to say when I emailed the clinic telling them about my health since the operation they were superb. They asked me to go in within 24 hours but said I should not be anxious as the NHS were not urging removal but that due to my ill health they would see me. I went last Friday and saw a lovely co ordinator who listened to all that I have been through and I showed her my breasts which now hand limp like empty sacks nothing like what I had expected them to look like post procedure and explained that all I wanted was them taken out asap as I have been through enough . They explained that they make it very clear what is within normal permiations for aesthetics but agreed to get me seen by a surgeon. I was so anxious I even paid a £500 deposit on credit card to book a hospital bed for the 22nd of January as beds were filling up and the coordinator said explanting them at this stage may be considered a 'major' and would need to be reserved immidiately but that post consultation she would negotiate costs. I went to see the surgeon yesterday and he examined my breasts saying there were bumps and hardening within the capsule and agreed he would take them out , he then rolled my breast upward and said he could alwyas put another implant in. We asked if this was necessary and he said we could just opt to have them removed and in 6 months time he would review my psychological state and physical appearance and then I could choose either an uplift and nipple correction or if neccesay that and a further implant if after explant there was not much good tissue left as he would remove the capsule too . I was overwhelmed with grattitude and called the coordinator to find out the cost. I was quoted over the phone and booked for pre op this coming Tuesday.

    I then spent the rest of the days glued to the news . An announcement was made and to my disgust  and they still say there is no need for routine removal. I don't blame my implants for my Fibromyalgia diagnosis but I am sure being filled with industrial grade silicone has certainly not helped. I went to my GP who said he could not even refer me for a scan despite my now sagging lumpy achey breasts as his advice was to continue on with private clinic as he was sure they would be forced to at least remove my implants and tidy me up as they had duty of care. I watched as several priavate companies stepped up to the mark and offered not only free removal but replacement also, but my company did not , instead I saw several quotes all of various ammounts and within 2 hours the price had gone up again . I am left in a very anxious state , I have no option but to go through with surgery on the 22nd of January and pay the ridiculous ammount , at the end of the day being in debt for another 5 years is worth it for my health.  I am wondering at this point , if there is any research being done on the impact of PIPS on fibromyalgia patients ? Anyone?

    I am not confident in the NHS at all now after last nights announcement and the last 8 years of being sent from one doctor to another and most of thinking fibro was in my head , having notes lost, scans misread and even my biopsy lost from my surgery just last year ..

    I don't know what else to say , my brain is foggy I have not slept since just before Christmas , but once more it would seem I have slipped through the net..

  • My first ever blog :-)

    by jannieyes on 30 December 2011

    I have only just last week received a diagnosis. Well it’s not even an official one, my doctor and I discussed it and are convinced it is fibro. For me that's enough of a diagnosis because at last after10 years of pain, discomfort and random other symptoms like IBS and constant infections I know what it is!! It all started when I had glandular fever when I was 16. I was SO SO SO sick for a year. I became intolerant to dairy after that as well. The pains started in my neck; I was a care assistant and so was told that it was due to the amount of lifting I was doing. This is very plausible. Then the pain spread down my back and across my shoulders. Within a few years the pain was in my hips and when was at uni it was so bad I used crutches to walk. Right after this it moved in to my pelvis and any movement was agony. I somehow managed to finish uni; battling PTSD and depression (another incident had triggered that). Over the last 10 years I have had significant flair ups where it is a truly chronic pain, but there have been times when I have been ok. Now that I know it is fibro though I know that the level of pain I was living with on a day to day level between the flair ups was most people’s idea of a huge problem!! I was asked how I lived with it, and well you just do. I had no answer really. I only went to the doctors this time because I put my back and couldn't move, also had become so weak and had no energy. That had never happened before. 

    So January see’s me starting yoga and swimming again and seeing a sports therapist for 2 hourly sessions of acupressure type massage he already saw me briefly and was surprised at the tightness that covers my entire back, neck, hips and legs! I’m so tender that it will be hard at first to tolerate it but my body is literally craving the massage. I have osteopathy for 10 years on and off and it has helped but it has never really got to the core of the pain and neither has any pain meds and now I know why.

     

    I had thought I was doing well and was getting over the weakness and then yesterday I did a 2 hour drive in high winds and it was like I had run a marathon. I got home could barely move and went to bed for 3 hours!!! I was kinda shocked at how it had affected me. I am still learning my limits and I guess I'm not so ready to live by them all yet.  But I shall learn. It took me ages to get up as well, like it required too much energy. It still takes me by surprise.

    What worries me the most is what will happen when I get pregnant. This is not something I am worrying about now but it does concern me for the future. I'm only 28 and cant really remember what life is like without being ill. It all started when I was 16 and since there has always been pain! I am interested in diets too. I am already dairy free, I've tried potato free, that made no difference and I am dabbling with wheat free, however I read somewhere that yeast free might make more difference. Anyway my help and advice would be really appreciated!

  • Getting through the winter

    by mummyb1980 on 07 December 2011

    My body is shutting down for winter. Not only is it shutting down, but it's causing me some serious pain. Owwee owwee OUCH! 

    If I was rich I'd fly south like the birds. But I'm not. So, I'm going to follow the example of the animals and hibernate instead.

    I'll venture out for supplies, to go to church and the odd event for my son. For anything else I'll see you in the spring ... Or online ;)

     

    If you want to find me I'll be snuggled in blankets, watching Christmas films, drinking hot chocolate, eating Christmas pudding. All under the glow of the Christmas tree lights. 

     

    If only!

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  • Understanding M.E

    by mummyb1980 on 01 December 2011

    Ive just read an article in another M.E blog that explains what it feels like to have M.E, even though the author has another disease she describes the choices we have to make so well. Here's the link : http://www.chronicmuse.com/wp-content/uploads/2011/11/BYDLS-TheSpoonTheory1.pdf
    Please take a couple of minutes to read the spoon theory.

  • hi I have finally worked out how to work this site and seem now to be able to blog and comment. I hope I remember how to do it again tomorrow.

    I was diagnosed with CFS in 1999 after a series of viral infections. I had LOADS of tests that all came back negative. Its difficult to accept an illness that doesn't show up on any test ! I feel this was the climax of this condition reather than the beginning of it. I'm told I had my first IBS attack at the age of 5. I had half a term of school around the age of 14 which some mystery something similar to gastric flu that stole my energy. I can remember crawling to the bathroom on my hands and knees. My parents, however, don't remember this and put it all down to puberty. I had gastric enteritis though my olevels. I couldn't keep up with A level study. I had glandular fever aged 18. I did my nurse training, got married and had 3 children before I was 26. Then some major family stress hit my little family, My husband developed some mental health issues that last for the next 20 years.

    So any illnesses and anxieties were neatly put down to stress and my husbands behaviour. I lost a ton of weight and began losing the ability to sleep well. I caught Campyla bacter. I was continuously going from flu to stomach upsets. In amongst it I was having some major IBS attacks that could take me into A and E with suspected appendicitis or ovarian cysts.

    Eventually in 1999 I was diagnosed and was labelled by it. Life was never going to be the same again. I had to give up work. Sick pay covered for a while. I had some CBT which was more about explaining the condition to me and all about the amygdula brain. I was running on a continuous stress response and becoming exhausted by it. It took me years to understand what that meant.

    I was told to listen to my body on a daily basis. To get myself downstairs and to try and walk round the (very small) garden. If it made me feel worse to stop and rest. If it made me feel better then to walk round again.

    My life at that point is difficult to recall. I was put on anti depressants which I reacted badly to. My husband was getting worse and my children had hit teens. I got off the antidepressants with the help of a homeopath and I began playing about with foods. I looked at boosting my thyroid function, which caused panic attacks. My own family, borthers, sisters and parents, didn't accept my diagnoses (most still don't) and I began to experience just how hidden but devestating and isolating this condition can be.

    I did slowly improve to the point I could work a few hours voluntarily in a school. This lead to having the confidence to take a few shifts at a corner shop, which felt great. I then tried to go back into nursing, but despite completing the course this porved to be too much and lead to a crash. I had to give up again.

    This co-incided with my husband's conditions improving greatly and the level of stress being reduced. we moved area and began rebuilding a more healthy life I tried to take some hours working but quickly found symptoms returned. I kept trying though. I much prefer to be working than not. The probelm was I coudn't do mornings. Being up meant pain and migraines. I was sent to the ME clinic, for a management course, but it started at 11am, which meant being up at 10am and driving there. By the time I got there I was an emotional wreck and by the time I got home I needed a dark room and to sleep. It was useless.

    In 2010 we had a car accident that left both my husband and I recieving medical treatment for whiplash. I was found to have cervical spondylosis. Physiotherapy for both the whip lash and the cervical spondylosis proved to be impossible because of the level of pain I was experiencing. This pain seemed to be coming from particular pressure points. I was sent to a neurologist and diagnosed with Fibromyalgia.

    This diagnosis opened up the suggestion of different medications which I was excited about. Finally I felt like I was going to get some real treatment. It quickly became apparent though that I was going to be senstive to these drugs. I was scared of finding myself in the same position as I had been right at the beginning of this journey, with the antidepressants, and so had to accept yet again that I wasn't going to get any useful treatement.

    I was unable to work. I wasn't entitled to any benefits. Incapacity benfits paid my stamp only. I did eventually get the lowest care componant of DLA.

    In desperation I contacted and alternative therapist who had treated my daughter for eczema and asthma as a child. I explained what had been going on and had to wait for a few months before getting an email to say that he now had all the equipment needed to treat me. The DLA I received just covered the expenses.

    So january 2011 I went to this trusted therapist and had an EIS (Electro Interstitial Scan). For the first time I could actually see the illness. It was a chemical imbalance in the brain that meant that my brain was under performing to the point where it wasn't able to achieve a restoritive sleep, and my gut was over performing to the point where I couldn't absorb nutrients properly. I was producing huge amount of gas that was bocking my gut and creating toxins in the body. My liver was trying hard to deal with these toxins. Everything was under stress.

    This scan lead to a diet sheet,

    Which means avoiding dairy, yeast, meat, potato, tomato, caffiene, wheat. The diet sheet is set out so that I REPLACE bad foods with good ones, so I don't feel like I'm missing out.

    The treatment involves a monthly session of accupunture (for pain), bio- resonance (which rebalances the gut) and skenar (which tricks the body into porducing more natural healing chemicals).

    Plus homeopathic drops to mop up the toxins (well I think thats how it all works).

    I have been using this treatment for almost a year. Initially I had some major improvements. I got my mornings back. I hadn't seen mornings for years, but here I was up and ok at 9am, twiddling my thumbs and trying to remember what normal people did at this time of day. The new diet meant I no longer needed IBS medication. I was beginning to feel well but really not trusting it. Then in April some family stress hit and it all seemed to go backward again. I was stuck in a boom and bust situation. I was trying to do too much when I felt well and not doing enough when I felt really bad. I would go for treatment and feel good fuor a while and I would forget that I had an illness which still needed managing.

    I am heading towards the end of 2011 and need to really work on how to look after myself, with this condition, with treatment and symptom management. I have been ill for so long I'm not sure HOW to focus on my needs for long enough to improve.

    I apologise now for any typo's or grammatical mistakes. I do have a fair amount of brain fog and find it difficult to scan text. I am guessing after looking through it a few times that its ok.....but I really don't know lol

    So this is where I start my blog.

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    It’s all about the fight and flight response and how ours is buggered basically lol. So I don't relate to stress in the same way as other people. Virus got our amygdala gauge stuck in the fight or flight mode. So we are using too much energy protecting ourselves from attack. When we are in this mode our guts don't work properly and we have too much adrenalin in our system..... mitochondria in our cells dysfunction and we end up crashing..... that’s why we get stuck in the boom or bust because our brain won't let us do anything else.... Pacing helps but we are programmed to do too much and then our body's shut down. By pacing we’re fighting against what our brain wants us to do all the time....but limiting the amount of damage by not letting our brain response go silly.

    It all makes sense.... I was told this in 2000 so it’s not new information, but they don't know how to change it.

    This is why lightening process, and gupter etc. do so well..... They think they can trick the brain into restarting the amygdala and the limbic system back into normal mode.....but if damage is there it is permanent, so the treatment isn't going to be...

    There is no cure.

    But we can aid our bodies in coping with its effects. I've just got myself some co enzyme Q10 to help the mitochondria and some 5HTP to try and give me some more usable serotonin  (antidepressants are useless) and some melatonin to help me to regulate sleep..... I was up till 4am last night !!!

    I checked on both of these with my alternative Dr. and my GP before starting them though.

    I have extra stress around right now so they think it sounds like a good idea. Of course my GP says there is no evidence to support this so there is no prescription available for this support.

    My alternative treatment is about rebalancing the whole system. BUT with stress around it can be difficult to fight.....which is why I had a bad month last month !!!!

    There’s never going to be an easy fix.....until science catches up.

     

    Today I fully intended to rest so I don't mind that I am still in my PJ's at 3.30pm. I was up till 4am last night because my brain was buzzing.....and then my smoke alarm started pipping. I can't sleep through noises. I can't have alarm clocks OR my husband breathing next to me ! This illness means seperate rooms if I'm going to survive. So at 4am I had the screwdriver out dismantling the smoke alarm.....whilst swearing and pouring with sweat from the sheer effort of moving around with a thumping headache, arms of lead and having to look up with a crunching neck! It was all worth it though as I did sleep then. I did panic briefly when with no batteries attached the smoke alarm STILL pipped a few more times.....but it did stop and I could relax. Thank God!

      I aim every day to keep to a healthy routine, but today I have had no breakfast or lunch, I have made a cup of decaf tea made with soya milk. (oh and a peive of sourdough bread....so I did have some breakfast) And I am now getting cold, so I'm going to head for the shower and master the act of getting dressed again for today. I aim then to drive and meet my daughter for a coffee....so that I can say I have got out of the house, although by the time I'm dressed it will probebly be dark again, so I'd better take some vitamin D. While out I will look and appear to be the same as everyone else. No one will know the effort needed just to motivate myself through the back pain, neck pain  and the limb pain, with my feet and hands cramping..... just to get into that coffee house..... but then for me thats an achievement in itself. I don't need or want the sympathy of others.

    This might sound extremely lazy and unmotivated but this is the reality of living with Fibromyalgia. Its not my idea of fun. I have not had the TV on at all today because the noise would annoy me. I do need a sense of achievement in my day though.... so for today....a not so good day....because I had treatment yesterday.... that sense of achievement will be a decaf, soya latte with my daughter.

    I can't have my day back....its gone....but i can't start from now to enjoy whats left of it...... x

     

    Sleep is one of my main symptoms.... I can't switch off and i can't wake up.... This has been really bad recently leaving up up at 2 or 3 am and unable to get up till after midday. As its now December its dark out and I am more than aware of missing out almost completely on sunlight....

    I don't sleep at all once up now.... there was a time when I just couldn't stay awake at all, sleeping a good 15 hours a day. Since starting treatemnt in January I seem to only need a more normal 8 hours.....I just can't seem to regualte it to the right time of day. i suppose this is progress.

    So what keeps me awake? temperature is one major factor. I'm either too hot or too cold. I don't seem to be good aat regulating my temperature.

    Noise is another factor. The slightest think can keep me awake. I can't deal with a ticking clock or the sound of someone else breathing (which is difficult when married !) The wind outside or the sound of the water in the pipes. I do have some relaxation CD's which can help with the frustration but they are still a noise which i end up listening to. Less annoying but still a noise.

    Then theres the pain. My legs can ache and this can build into something impossible to sleep through. Heat pads can help this, but then if I'm too hot I can't sleep anyway. My arms and feet can cramp. I get pins and needles in my hands. I can get nerve pain shooting through my head which leaves my ears so sensitive that I can't lie on them. My neck can cramp and my lower back start to catch. My hips and knee can also join in making it impossible to get comfortable. I have found a cloud pillow which keeps my neck in a better position and helps prevent my arms going dead.

    Because of my sensitivity to medication I am left with paracetamol  to deal with pain .....but if I'm lucky it will do the trick.

    Another issue is my thoughts which can whizz around my head like they're in a blender. I keep a note book by my bed now and if this gets too bad I will turn on the light and begin to write it all down.

    This is why I have turned to writing on this blog at 2.30am tonight. Its impossible to fight when my brain just refuses to shut down. I have to accept it and go with the flow. Extra stress will make it worse. I would really like to get my mornings back though....

    I'm hoping that the 5 HTP I have started taking will kick in soon and help me out with this.

     

     

     

     

     

    ss

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  • Discovering miracles

    by mummyb1980 on 20 November 2011

    I'll tell you anything, give you everything...just let me sleep!

    I feel like I'm being tortured by my child, but I can't reason or bargain with him. I can't even blame him, he's too poorly. I've got to take it on the chin and smile, hiding the zombie like state within.

    It's a poor state of affairs when I look back on my 'bad days', when I was bed bound, with fondness. Yet this is where I found myself today, only briefly mind you. I wouldn't actually like to go back to those days, but the thought of a day in bed today sounds bliss. My body feels like lead. A painful, achy lead. I'm fortunate that my parents live close, so when my husband goes to work, one of them can help. But there's a lot of time that I have to fend for myself with a sick baby and active toddler. Hard work, life is tough. Then I stopped and wondered how on earth I was doing what I needed to do without getting the necessary rest. Only one way - divine intervention. Literal miracles are occurring in my life every day. I could NOT do this job without them.

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  • The diet

    by mummyb1980 on 08 November 2011

    I've been trying to avoid it, but the worse I get and the more I struggle, the more  I can't avoid ... the awful diet.
    It came to a head last night with me telling my husband 'if I ever say I want more kids, shoot me'. Then I realised (much later) that its not the kids that's the problem, its my health. I'm inclined to whine and complain when I'm on my own, a trait I'm not proud of, but the time has come to stop complaining and do something about it. I don't want to become totally house bound again and the cold weather is already taking its toll on my body. When I did the diet before - it worked. Its time to try it again, Eek! I love my food, particularly junk food, especially whilst breastfeeding. The diet is going to be pretty bland in comparison with my diet now and it also requires so much more effort, a lot of preparation for all meals. No more just making a sandwich. It doesn't make sense to me that I have to expend energy I don't have in order to get more energy. But so it is!
    I remember from last time that I felt much better, but it also got me down due to the strictness of the diet. So this time I will allow myself one day every few weeks where I can eat normal food. I think this  will help me stick to it, because not even the incentive of better health can motivate me to stick  to it all the time. The diet calls for me to refrain from gluten, dairy and sugar. Right now these are my three main food groups! That's not all though, I can't eat rice or potatoes, except new potatoes. There's only certain types of fruit, veg fish  and herbs that I can eat. Yep, its strict.
    This week I'm preparing myself to start. If there are any good recipes that you know that fit into this diet, then please, please, please share!

  • Slow and steady wins the race

    by mummyb1980 on 06 November 2011

    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.

  • '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. My son 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 he 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 :)

  • M.E.

    by gary10 on 01 November 2011

    My wife Lyn has had M.E.for about 20years and has tried various options, rangeing from diazepam ,prozac,seroxat,and now propananolol,which seems to magnify her symtoms,.Has any body any experience using this drug for M.E.?Lyn has also tried CBT but has differculty in pacing herself and tends to go bull at a gate to make up for the time she loses when she's ill.Lyn tends to self medicate with drink which can lead to quite dangerous accidents. The next option Lyn is going to try is hypnotheropy, to help with her terrible anxiety attacks and to give her confidence a boost because after alll these years it has taken a terrible toll. The worst is the peaks and troughs which happens regulary.

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  • A pause for thought

    by mummyb1980 on 31 October 2011

    I love my kids, but BOY is it hard work. My youngest is nearly 4 months old now and I'm feeling that same deterioration in energy as I did with my eldest. 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 my son. A wise friend once said that there are times and seasons. With this 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.

  • One of the most inconvenient symptoms of M.E/CFS is Brain fog. I say inconvenient, but what
    I mean is debilitating, annoying and a knock to your self esteem. Brain fog is a term to describe the lack of concentration, difficulty learning new things, poor memory, inabilty to find the right word, etc that people suffering from M.E/CFS experience. Couple it with pregnancy/mummy brain and I've got no chance. I'm trying to enrol my eldest into nursery school, so I rang the school and left a message,which went like this - 'Hi,this is Mrs Barber I'm ringing to enquire about the hours my son can attend your nursery for free. If you can ring me on 07885 ... er.. sorry i cant remember my mobile, if you can ring 012572 ... erm .. sorry, cant remember that one either. Would you be able to email me on..sorry, ...its...erm ... i****w@yahoo.com. Thanks'
    I've come to learn to laugh at my poor brain now, but its not so easy for those who deal with
    me. Getting lost as I've forgotten the way to familiar places, parties/appointments I've forgotten to go to, dinner disasters to name a few examples. My husband has the patience of a saint as my brainfog occurs daily and has been the cause of many a panic for one reason or another. When I was really poorly I was unable to read or watch tv for long. Now that I'm on the road to recovery I'm having to retrain my brain slowly. I'm reading again, but still can't concentrate or read the works i used to love, I'll have to wait a bit longer for Dickens. Writing this blog is also a way for me to improve my ability to recall words and form sentences, which seem so hard to do when I speak at times. I make endless lists for all sorts of things, and set alarms to remind myself to read them. I find this very useful, but I still forget :)
    As annoyed as I get by brainfog I remind myself that this isnt me, its a symptom.

  • Intro

    by mummyb1980 on 28 October 2011

    As I sit and watch my three month old kicking and gurgling in his play mat, whilst my two year old pushes his cars around the floor wearing only a vest and pumpkin hat I wonder what life would have been like had I not made the leap of faith to have a baby nearly three years ago.


    Back then I suffered quite badly with M.E/CFS. I was barely able to walk or even sit up without feeling extreme fatigue and pain. Even though my husband and I had heard that pregnancy may cure my condition, we found little evidence to support it. We both desired to have children, but found the decision a hard one to make. Could I risk bringing a new life into the world when I could barely take care of myself? After lots of thought, discussions with family members and prayer, we decided to take the plunge and have never looked back.


    I hope my blog about life with a family and M.E/CFS will aid others who are also making this decision, and give hints, tips, support to parents and those in the same boat and provide insight to the condition to those who know little about it.

  • Many years ago , I was sat in a group therapy session upset that I had no formal diagnosis and list of physical ailments as long as my arm which seemed to come and go leavign me wondering if I would ever be diagnosed officially with anything at all. I asked why I had been refererred to this group for depression when I was not so much depressed in the way I imagined depressed people to be but simply frustrated at being in so much pain with little or no idea as to the cause or to the treatment. I was told to look at myself as if I were a can of beans on the shelf with a very detailed label. The label itelf 'beans' would satisfy a lot of people but there would always be someone who needed to check the sugar content or something similar and would have to read the small print to decide whether or not to purchase a particular can of beans. The way I took this was that in fact a label is only there as a guideline or a generalisation. not everyone will be looking for the exact same ingredients and not everyone will tolerate all the listed additives.

    I see my fibromyalgia in a whole new light these days and I do feel I now have it under control both from a physical and mental point of view.  I am convinced that like many people my lack of a concrete mental health diagnosis was down to the fact that my natural response to pain was to seek help , on seeking help and being tested I expected clear cut balck and white answers. On receiving what I perceived to be only grey answers I became unsatisfied, frustrated and ultimately as my condition worsened with anxiety and stress I became angry. I had to find a reason to fight this illness, a focus. I am not saying it has gone away or that I did not have it , all I am saying is that I understand so much more about my triggers that I can self manage. I have had the support I needed to not give up. I can recognise when I need to rest up and pace myself and I enjoy my activity levels which are on the increase.

    The line no pain no gain could never be truer. A psychologist said to me once that he likened it to making one of the toughest decisions. He asked if I were stuck having fallen down a hillside and I could feel the pain if what certainly looked like a broken limb but had only two options what would I do. I asked what 2 options I had , unclear as to where he was going with this idea. He said option 1 was to sit there in pain , feeling the pain, analysing where it was coming from, worrying about what I might have done and hoping that someone would come and rescue me, the other was to acknowledge that yes I was in pain but that if spent too long sat there waiting for someone to rescue me ,help may either never come or come to late , the answer therfore would be painful but I would have to get myself moving through the pain and help myself ,find away to get myself up and this whilst in the short term may seem agonising would be a far certain way of gettin gout of the hole than to sit there analysing over something which I could do nothing about unless I began to move myself. 

    I guess it has taken me some time to realise that I needed to break the cycle of frustration and get myself out of this virtual hole. Climbing out of this hole was very painful at first  but I am lucky that my pain can now be  managed by a morphine patch, this allows me to be more active and mobile and in turn has given me a life back which I once believed was forever lost . In being more mobile I loosen my joints and muscles and do not suffer with the rigidity and stiffining and numbness. I am also loosing weight and putting less pressure on my organs,  even finally sleeping easier too. I feel physically tired and when I do I sleep .  I strongly believe since my last operation that I have finally joined all the dots together . I believe that my fibromyalgia may have come about due to an ongoing chronic infection. This infection affected my sight,my mobility and the medications in turn affected my mood and sleep patterns all painting a very dim perspective on life. But as soon as the infection was adressed a huge weight was lifted, both physically and mentally. I wonder how many others have spiralled downwards with this condition. I was being treated for so many seperate things and not as a whole person. It took for several specialists to put their heads together and for me to decide to pull myself together. I would say you have to start your crawl yourself and when you do you will find so mnay people will support your efforts that the rest of the climb will just get easier and easier . I can't thank the NHS enough for giving me my life back.

  • No Treatment

    by Fibrobabes on 20 October 2011

    NHS Gloucestershire PCT refuse to treat me!  If I was a dog they would put me down!   They don't care about the frontline NHS!   They hold the fibro and ME against me.  I am surprised that they won't treat the asthma!    Please can we have guidelines for those who can't take conventional meds due to allergic reactions.   Where is my care pathway?

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