I am so pleased to report that it has been several weeks, maybe even a couple of months since I last had a flare up that has lasted anymore than 24 hours. That for anyone who suffers with fibromyalgia is a wonderful thing to report. I have had periods of chronic fatigue but not the excruciating pain.
This particular flare up started on Friday night. I remember sitting on my son's bed chatting, and all of a sudden I started to talk absolute gibberish. We were just chatting normally and I said something the wrong way round. I can't remember exactly what that was but something like "Have you nailed your cuts?" Now my family are all quite used to this sort of comment from
me....I often get fibro fog, but when I did it three times in 5 minutes I knew I either had a migraine coming...or a flare up! We laughed it off and I commented it was time I went to bed to try and ward what ever was coming off but unfortunately for me it was both. All part and parcel of the same flare up. As I mentioned in a previous blog, it started with my chest, it was hard to breathe on Saturday morning, and walking and talking made me feel very out of breath. Sometimes the fibro sits in the nerves leading to my lungs and can affect the lining around my heart so my breathing can get tight, leading to hyperventilation (because I shallow chest breathe) and that leads to the anxiety symptoms and dizziness.
By late morning I was feeling periodically dizzy, tired and weak but kept going to get my jobs done. I did everything slowly. my husband drove...but what I should have done was just go home and rest or better still to bed! I still would have had the flare up but I may have reduced it a little or at least I would have been comfy in bed but instead it hit in the middle of the shopping centre and it was hard getting back to the car because my legs wouldn't work, my vision went, I had the shakes, and I just wanted to lie down on the floor. Poor Dom had to half carry me back to the car but again this is normal for us, so we don't panic anymore. we just go home.
Anyone who has fibro knows how frustrating these days are. It's so easy for people who don't suffer to say "take it easy" "Slow down" (I could physically hit people when they say that), "Your doing too much" bla bla bla. What do they know. I wish they could have a week in my life so they could understand...well actually I don't because I wouldn't wish this on anyone.
How would you feel if doing to much was just getting out of bed and getting dressed? What if looking after your own children was so exhausting some days, you fell asleep while they watched a film or played around you or you had to have someone fetch them because you didn't feel they were safe in your care? What if the pain in your joints, muscles, tendons, bones, and even your eye balls was so intense you couldn't bare it and no matter how many pills you took the pain stayed the same but the pills gave you side effects like sickness, more fatigue, feeling spacey, all on top of what you already had? What if suddenly your brain got so mixed up you couldn't speak, your vision went or your hearing became so impaired you could hear people talking but couldn't process the words? If you couldn't life the hoover, or even a cup of tea. If you were so tired (when you had no reason to be) you slept for three days and nights. If this was all a regular occurrence for you, no matter what you did or didn't do, do you think peoples (well meaning) comments like "Slow down" would benefit you? No! Me neither.
Personally I am sick of slowing down. I go for months without working at all and when I do it's very part time, which means money is a constant worry. Daily chores are hard work even on good days so going out, stress, long days or God forbid an illness floors me and it can take weeks to get back on track. I have had this condition since I was 15 and the last 4 years it has been almost constant. The only break I get is a couple of weeks here and there and I can tell you those breaks are soooooo so very welcome. I pray for those times and I treasure them.
I look fine to those who don't really know me but some days I have to walk with sticks because I am so stiff or in so much pain. Occasionally I have only been able to go somewhere if I have hired a wheel chair to get around. I can't play active games with my three boys very often, unless I am in a remission phase and that's hard for any parent to handle. My boys are brilliant. They understand now they are older but why should they have too? My illness affects all of my family and it hurst me so much to see them upset and worried about me. The times my children have seen me carted off in an ambulance, or seen my husband have to carry me up to bed. the times we've had to cancel days out or cut them short. I am aware I sound angry and bitter. I am! I am angry I have this life changing condition and I am bitter that it takes such a lot away from not only me but my family too. My relationship with my husband is greatly affected and I thank my lucky stars every day that he is so understanding and stands by me no matter how tough things get because there are many who wouldn't but I sometimes feel he stays because he feels he has too. Not that he has ever said that or implied it but I wonder what kind of life he could have with someone healthier. I worry my boys miss out because we can't afford to take them on holidays abroad or do all the hobbies and activities they would like too and I hate that I can't buy them really nice clothes and shoes. There is no financial help for people with fibromyalgia because it isn't recognised as a disability!
In saying all of that I do accept I have this condition and I do make the most of my life in ways that I can. We have adapted as a family I try and work around the spoons theory as much as I can and I look after myself as well as I can which does make difference. I do still plan things because I live in eternal hope this will go away one day but I have to live my life and enjoy it so I refuse to give in.
This week I have been so tired and so sore I hadn't touched my house for a full week. No hovering, no dusting, no cleaning. Now I know for some of you this isn't a problem but for me it is major. I can't work a full time job and haven't done for a long time . My very part time job can be way too much sometimes and doing normal things like looking after my boys and keeping our home nice are big things for me and they are really important. Can you imagine an existence of living like this? Just take a few moments to really think about it. Your 2 year old child has fallen and hurt themselves. But your having a pain day and haven't got the physical strength to pick them up and hug them. So you slowly lower yourself, painfully to the floor and snuggle them in but the very fact they are touching your body, no matter how gently has tears of agony running down your face. Or another one. Your children are desperate to go horse riding, ice skating, or to play football. You go along too but have to side on the side lines and watch. However yesterday I managed to take my eldest and youngest shopping for 2 hours and when I came back my eldest helped me clean the house. He washed all the woodwork for me so I could hoover and clean the bathrooms and kitchen and it made such a difference. It has meant I could rest last night so we can go out for a few hours today. I hate that he has to do that at 15 but he is a star. All my boys are.
Don't get me wrong. There are many people with far worse conditions than mine because theirs are permanent and I am forever grateful that I do get good days and indeed, good weeks. I remember getting my diagnosis and almost hugging the rheumatologist because it was Fibromyalgia and not MS, Lupus or Palindromic arthritis. All of which are in the same group as Fibro but also all of which are much worse. However I still had to come to terms with Fibro because it really is life changing.
Fibro varies greatly from day to day and person to person. It comes with pain, ranging from niggling toothache pain to excruciating pain that your sure would be easier if you just removed the limb in question, (obviously it won't), fatigue, such exhaustion your body actually shuts down mentally and physically, migraine, headaches, brain fog, loss periodically of gross or fine motor skills, tingling, numbness, memory loss, insomnia, stiffness, IBS, swallowing difficulties, ME, massive temperature variations, anxiety and depression. Not to mention the subsequent frustration and emotional roller coaster is brings. I think there is a whole other list of symptoms I have forgotten but this is a general rough idea of many of the common ones. This is why it is so difficult to diagnose because the symptoms are so varied and every day can present more or less symptoms than the day before. One day your fine and feel great. The next day your lying in bed and the duvet cover is too much to bare because it's causing you so much pain you would rather be cold, but cold limbs hurt more. The best bit is medics have no idea why we develop fibro, what it actually is or why women are more susceptible than men. They also have no real clue how to treat it. Some doctors don't believe in it. Some think it's 'All in the mind' but more and more doctors are starting to recognise the condition and offer treatments which 'may' help ease the symptoms. Unfortunately these treatments are usually anti depressants and strong pain killers, which can have side effects far worse than the symptoms themselves so it really is all a case of trial and error to see what works for you.
A flare up sometimes comes with pre flare up symptoms. Like mine this week. I knew on Friday it was threatening but resting would not have prevented it, so trying to do what you can while you can is precious. It's boring lying around all day, winging you are tired or hurt or just feel out of sorts. That's the hard bit for me when it goes on and on. I feel like I am always complaining because the pain is bad or I am tired. It's easy to say "Be positive" A counsellor once told me that when people asked how I was to say I was fine because If I said I was fine I would feel fine. Stupid man. I do say I am fine and I am positive and I do a lot more than some other people who have this condition but saying I am fine does not make me fine. If wishing this disease way or saying I was fine would take it away I wouldn't have it in the first place.
The trouble with fibro is people don't believe you. Someone once said to me "Oh I had that once but healing at my local Church took it away" Oh How I wish that would be the case. The chances were she was one of the very lucky and very few people who have fibro for a short time as a reaction to a virus and then get better. There is a small proportion of people who do get better from it within the first five years and I couldn't be happier for them. For the rest of us we have to learn to manage it and cope the best we can.
For me I do find diet helps. Keeping caffeine and alcohol to an absolute minimum. Cutting sugar down. Keeping treats like chocolate for special or odd occasions. Drinking mineral water instead of tap water. Exercising daily in what ever way I can be it yoga, walking, swimming, biking. Some times it isn't possible but I try and do something every day because the fitter and more mobile I am the better. It's not always easy and sometimes you really have to force yourself to go through the pain barrier but the results are always positive in the long run. Getting enough sleep is also a major factor and this means cat napping during the day if I need to. I simply don't listen to those who have a go about me having a rest or say they couldn't possibly sleep during the day because I have to do it to get me through the day sometimes.
The days when I don't need a sleep I am usually in bed just after the boys but if that means being able to get through a whole day without a sleep or feeling so tired I could fall asleep on a washing line then so be it. Some of my friends think I am boring because I don't drink anymore and can't go out clubbing all night anymore. Well so be it. They are not true friends because if they were they would understand that if I go out I am often in bed for a few days afterwards and that just isn't an option. I do however have some amazing friends who really understand and work around me. Last year we went to London and I was having a really bad few weeks. All of the girls took turns to be with me (although I was quite happy for them to go off and do their own things), they made sure I ate when I needed too, rested when I needed too, they didn't expect me to drink when I said I had had enough and when I was tired in the night club a few of us took a Rickshaw back to the hotel for an earlier night. They helped carry my bags and made sure I didn't have to walk to far and I can honestly say they were amazing. I do love those girls.
And that's what living with fibromyalgia is like. It's doing what you can when you can. If your having a good day, go out and really enjoy it. If your having a bad day find things to do that the whole family can enjoy without making yourself worse. Watch what you eat and drink. Don't push yourself to levels of exhaustion, exercise daily in whatever way you can and by doing all of these things you will find that gradually you can do more.
The hard bit is accepting that no matter how much you look after yourself and how much you rest a flare up will hit when it hits but by being physically and mentally fit you can cope better and the flare up shouldn't be as hard hitting or last as long.
Try and accept that you will have crappy days, for me it is worse when the days are dark and or damp, but that days do pass and the next day brings the potential of a good day.
Don't take to heart peoples comments. No matter how well meaning, because only you know how you feel and what works for you.
Understand that sometimes family and friends seem to be unsupportive or over bearing but it is only because they want to help and feel useless that they can not take away your pain.
And most importantly live life in the best way you can. There are lots of negative about having fibro but the good points are you do get remission phases and it isn't life threatening. The immobility and pain are not permanent so no matter how difficult it can get, you do know that there are good days ahead and by helping yourself, and not fighting against the disease you can assure you get more good days than bad.
Treatments that I personally find helpful are Massage, Reiki healing, Meditation and swimming. I self treat as much as possible an my husband and sons do massage on me but I do feel I have better effects when I can have Massage or Reiki from a practitioner but I can't afford it if I am not working so it is all a circle. If only the government would see that holistic treatments are as important as the medicines they prescribe, (which don't usually work), they would save money in the long run and have healthier happier patients. Maybe one day!
Hi my Name is Philippa Woodsford and I am a Holistic therapist, Reiki Master Teacher and Hypnotherapist. I suffer with anxiety and depression due to a condition called fibromyalgia which I believe is linked with an auto immune disease I was diagnosed with at just 17. My blog is written for me as a sort of journal but also in the hope it may bring hope and healing to others suffering with similar issues on a daily basis. Enjoy