Joy Knight

I have been unwell for about the last 10 years, I had an under-active thyroid, which I didn’t know I had and I collapsed with that, so that was ongoing and then I had polyps and I had 2 operations for that.  About 6 years ago I was doing my shopping and suddenly had this excoriating pain in my ankle, so much so I had to phone my husband because I couldn’t wait there and it just gradually got worse, and then it would go completely and then come back, that went on for a couple of months. 

I actually thought I had MS, so I didn’t go to the doctor because I kept on thinking, it will go, eventually it got so bad that I did go to the doctor and she did various tests, she thought it was rheumatism, various things and everything came back negative.  This went on for 6 months and in that time I gradually got more and more exhausted from doing the slightest thing, from being a incredibly active person, I was not waking up until 9am, managing to have a shower and really would like to have gone back to bed then.  I just sort of kept going went back to bed after lunch and I would sleep anything from 4 to 6 hours.  My husband used to say I just didn’t move, it was if I was unconscious.

I had no idea what it was, I just felt so ill but with this terrible guilt that it must be something, I must pull myself together and that it was something I was doing.  Because my doctor didn’t know and nothing came back, I did begin to think I was going crazy to be honest. 

My doctor had been incredibly supportive and eventually after 6 months I went in to see her again and she said she had been doing research and she said I am sure you have Fibromyalgia (FM) and Chronic Fatigue (CF).  She gave me a leaflet about FM, I had vaguely heard of it but I dint really know what it was, I can remember sitting in the waiting room, waiting to have blood tests, I don’t really know why I had to have blood tests, I just remember that is what I had to do.  I went into the nurse and I just sat, because the first thing I had read on this leaflet was FM is a very strange illness.  People may say to you, ‘Oh you look well’ and inside you feel so, so ill and that was the first time that I felt, yes, that is exactly how I feel and I can remember the nurse holding me because I just sobbed and said this leaflet is about me, everything on here is how I am.

I had a few comments from family and friends that I just felt that they thought I was making a fuss, so I was struggling all the time to lead a normal life when I felt so ill.  Then the doctor eventually sent me to a rheumatologist, I went privately so I could be seen quickly, hoping that he would find some amazing thing and just give me something and I would be better.  I can remember I paid £190, I was in there for 20mins, he pressed all these spots, because with FM there are 18 spots in your body that are incredibly painful, which were excruciating, which I didn’t even realise.  He said, there is nothing I can do for you and gave me a sheet of paper with books on to buy/borrow on how to deal with pain and I cried all the way back home, thinking this is a nightmare, so that is how I found out about it. 

I became quite depressed and I am not a depressed sort of person but I just hated what was happening to me, I had gone from being very, very active, swimming and tap dancing, I know everyone who is young now thinking a 66 year old tap dancing is funny but I loved it, my husband and I played table tennis together at our local sports hall.  Then suddenly I just felt I was living in a twilight world, that’s all I can say, all I wanted to do was lie down and go to sleep and I hated it.

I fought it in the beginning; I fought it tooth and nail. But the pain became excruciating, I could hardly walk anywhere because the pain in my thighs was dreadful, I couldn’t walk more than 50 yards and it was so painful.  Then I would get shooting pains in my shin, I used to play hockey, and the pain in my shin was just like it used to be when I got whacked across the shin with a hockey stick, because I never wore shin pads as I couldn’t run fast with them, that same thick pain.  After about 9 months my husband bought me a walking stick, we bought it at a garden centre and these pictures stick in your mind.  we walked past a window and I could see my reflection with a walking stick and I can remember the tears pouring down my face thinking, what has happened to me?, how can I have gone from being this person to being with a walking stick.  That is how it went on and then within 3 months I realised that unless we had a wheelchair I wouldn’t be able to go anywhere, it wasn’t just the pain, if I pushed myself  I would start to get faint.  I have heard other people say since, it was just as if someone had stuck a needle in me and dragged every bit of energy, I just used to feel I was going to collapse, well I did collapse in lots of stores.  I have been ill in M&S, Lewis, ASDA, I have had to get chairs with water and stuff, in the end my husband said this is ridiculous, I am going to buy you a wheeled scooter, which was like another nail in my coffin really.

It took me over a year really to give in and think this is it then, maybe this is the rest of my life, I have got to make the best of this.  I have got wonderful children and lovely grandchildren and they were all so supportive and kind, my husband has been absolutely amazing and so I thought well this is  it, I have just got to make the best of it. 

I started doing what I call the Pollyanna game, which I always taught my children, that whatever situation you were in, you could always think it could be a lot worse.  So that is what I started doing and thinking I haven’t got cancer, and in the mornings I am still breathing, and just do whatever I could.  I found craft helped a lot because I loved making things.

I met a friend whose son had ME and he had it for 8 years and she was seeing somebody in Bolton who thought it may be caused by a beryllium infection, so I went down that road and had loads of blood tests and all sort of things, with Andy Wright.  He was lovely, it is hard to say, but I honestly don’t think it really helped an awful lot.

My doctor did try me on anti-depressants because she said that would relax my muscles and I went to physiotherapy as well, which did help, she did acupuncture, the physio, she was a lady who was recommended to me who knew about FM and ME and she was the sweetest girl and she helped me because I was able to talk to her.  That was what I found really difficult because you don’t talk to other people about it because they think ‘here she goes again, moaning’ so you keep it to yourself and sometimes even with your family, you don’t want to keep saying, actually I feel terrible today.  Sometimes I felt I needed somebody just to scream at and say, actually today I feel absolutely awful, I was able to talk to the physio really, she helped. 

Something that was absolutely amazing, I thought was amazing, she used to do acupuncture on the backs of my thighs because she had never seen muscles in such spasm in all her patients.  The first time she did it, she would press my leg and say did that hurt? And she would find the spot and it was excruciating, put a needle in, which sometimes hurt a lot, most of the time it didn’t, the first time she did it, she stood up and said this is amazing the needles on your legs are a mirror image in each leg, I couldn’t see because I was on my tummy but it made me think there is something, this is real, I cant imagine this, there is something real there, that the 6 needles were in exactly the same place on the opposite side on each leg.

The next stage, I think that was about 2 years ago, I had an under-active thyroid, somebody told me about this gentleman in Birmingham who said that most of these problems were caused through under-active thyroid so I did go to see him but I just didn’t relate to what he was saying, somehow it didn’t feel right for me, it may be for other people but it just didn’t seem right for me, so I didn’t go back again. Tthen I thought, that’s it, I am not bothering with anything else, I have wasted my saving, I just have to accept how I am, so I just got into a routine of getting up at 9am, going back to bed again at 1pm, sometimes I may be asleep 2 hours, sometimes 3 or maybe more and just do what I could really in the time that I was up, I just accepted my life was like that. 

Really the crunch came last year, because my daughter has a baby and I was trying to help her and I was absolutely exhausted, she doesn’t live in Bristol, so we were travelling to see her and I just felt so ill, and I realise now I really did proper depression, I really felt really awful.  I couldn’t sleep then, I was really tired, I was awake and then I was having terrible nightmares which I had all along until I felt better, I would wake up screaming and frighten my poor husband to death, all sort of horrible things, my grandchildren were shut in a barn and it was on fire and I couldn’t get up, I would wake up and have to have a cup of tea and stay awake for an hour, I would be shaking so much.  Those were much worse because I had got over tired because I had pushed myself for my daughters sake

Then last June I got really, really down, I just didn’t want to get up anymore, I just thought I might as well stay in bed, that’s what my body wants to do, that is what I am going to do, I will just stay in bed all day and I did that for a couple of days, just getting up for an hour or so.  I can remember my husband went out and it was quite scary really because I can remember thinking my family will be much better off if I wasn’t around, I know they would grieve, and they would all miss me and it would be horrible but they would get used to it afterwards and then they could go on with the rest of their lives without having to keep worrying about me all the time. 

My eldest daughter is just amazing and she was calling me every night and she works full time, has 2 children and a home to run and I just felt I was a burden really.  I can remember thinking quite clearly then that that was what I was going to do, but I got this little book that my friend gave me and I just felt open this book and I opened it.  It was actually a bible verse to say God does care for you, even when you have grey hair, which I thought was quite good because I have white hair, and I just felt no what are you thinking about!  That was when I really felt my worst and yes I did feel dreadful and I was dragged off to the doctors and my doctor was lovely and she said why haven’t you come before?  I said because there is nothing you can do for me, you have told me, so she did give me a very small dose of antidepressant and I think that did help for a month or so, it did calm me down really.  I was thinking before I spoke to you, going back, you go in stages, you go for a couple of months and think, oh right this is it, this is how I am, then something happens that you really want to do that you can’t do.  I haven’t been to many but when I went to a couple of parties and everyone is up dancing and I love dancing and I cant dance, and it is like, for goodness sake!, and I hate it.

The frustration hits again, all the things I would like to do, I couldn’t even go to Cornwall, I couldn’t go on holiday.  We love travelling, I couldn’t go anywhere or do anything because just the thought of packing a suitcase and thinking what to take and then if the weather was bad what would we do, I couldn’t walk around on cliffs like I loved to do, I couldn’t go through national trust properties because I couldn’t walk.

I still didn’t think there was anything I could do, I just prayed really because I am a Christian and I thought there must be a reason why I am going through all this, I don’t understand it but there must be.  I thought I have got to be brave and this is how I am and just trust that maybe something might happen, a cure may be found for it eventually.  I’d go to this craft class on a Monday, my husband would take me, it was all day but I just used to go in the morning for a couple of hours, one particular day, only about 6 weeks after this crisis that I feel I went through, the lady who runs it said there was a new girl coming today, I put her by you and you will know why when you talk to her.  It was a young lady called Sharon and I started to chat to her and she was really nervous so I was doing my mummy act, she was only in her 30’s and I have a daughter your age and just generally chatting. 

Eventually came that she had been ill for 8 years with ME, so I just sat back in my chair and said that is amazing, so we didn’t do much craft that day.  I can’t tell you it was like a light bulb going on in my head, because she had been with you then since the January and she had found the clinic on the Freeom From ME website and so she just told me all about your clinic and she sent me the clinic’s DVD and the brochure and various things and it was from there, by the time I got to speak to somebody, who was Sarah, that was last October.

I thought, I don’t believe this, it is not psychological, I am not a head case, this is medical, there is something wrong with my body, but it was a real eye opener because on the paper I had to fill in, I had to write all the things that had happened in the previous 10 years.  When I had written all the things that had happened, my son was divorced, my mum was very ill, my husband had a aortic aneurism repair, my mum and dad were very ill, my best friends husband left her with 3 children.  When I went through all that I had emotionally carried in the previous 10 years, plus the fact that I wasn’t well myself because I had polyps and I had had continuous sinus infections for years, obviously that had been an ongoing problem.  When I read that and I showed my husband, and he actually cried when he read that and said, no wonder you have been ill, he said anybody would feel utterly exhausted.  When Sarah started talking to me about all these things and about my mum, our relationship had always been quite difficult in that I always felt that I never came up to expectations, even at my age, which just sounds ridiculous now but I do, Sarah helped me through so much of that. 

I went in our back bedroom to speak to Sarah and I felt so poorly and I was really anxious about speaking to her and it was all different, what is she going to say?, where is this going? And she said when she started to talk to me about ME and how she had been, I can’t tell you how it was just incredible to speak to somebody.  She said something that I have never forgotten, she said I guarantee when you wake up in the morning, you open your eyes and say to yourself ‘Oh no I have got to do another day, I have got to get up, I have got to do another day, where do I hurt today?, which part of my body aches?’

I did feel like that every morning and I really cried then and I said I have never said that to anybody because that sounds so wicked and awful to say that when people are dying and children have got cancer, how wicked to say you didn’t want to get up, but that was so amazing to be able to be absolutely honest with her.  It was very bizarre because I spoke to her down the phone so I was telling all my inner most thoughts to this lady, I had no idea who she was and then she was telling me these amazing things back, that it was ok to feel like that and I didn’t have to feel guilty and it was perfectly understandable that I was reacting the way I did, and my husband said when I came out of that room after that hour he said I looked a different person.  I feel even from that moment, I came out of that room thinking, I am going to get better, I really believe what she is saying, it all makes sense, this circle of stress and pain and stress and pain.  For the first time since I have had this, I have spoken to somebody that knew exactly how I felt and it made sense, and it was incredible really.

I also did some nutrition work with Niki, I obviously did all the tests she asked me to do and that was interesting when I got all the results, that was another factor that actually my adrenaline was absolutely level, where it should have been different levels during the day.  I had a lot of insulin, I had hardly any magnesium, hardly any potassium.  I am on a high protein, low carbohydrate diet which was fine and I have goats milk and people say ‘I can’t have that’ and I think if you felt as ill as I would you would drink anything that would make you feel better.  I had done everything she told me, I was taking I think 11 different supplements at one stage, some of them were pretty disgusting concoctions, but you do it and if that is going to make you feel better.  Since October I started taking stuff and various things for muscle building and for relaxation and to replace the elements that were missing like potassium and one very high vitamin D, it is sort of just gradual, I sort of had gradual things.  After Christmas was the first time I thought I am definitely feeling a bit better and it is gradually improved since last October and now in the last 2 months I have felt so much better.  The physio that I went to see said that the best thing you could do with your muscles is to go swimming but our local bath is very cold and so she said you need to go somewhere where it is warm, so I found one to go to and they have a hot tub there. 

I started in February doing 2 lengths which really frustrated me because I used to be a strong swimmer, I gradually built it up every week and the week before last I did 24 lengths in 20mins.  I have walked form my house which is about half to ¾ of a mile to my mums, I have walked to the high street for the first time in 5 years from where I live and a gentleman came out of the shop and said Good morning how are you? I stopped and said do you really want to know?  So he thought this mad woman, he said yes, and I said I am so excited I could run up and down this high street screaming with joy because this is the first time I have walked down here for 5 years, tears came up in his eyes and he gave me a hug and he said you have made my day, that is such a lovely thing. 

I came to the conclusion, I thought if you think of your body as an engine, it was everything, my physical side and the emotional side was all in a mess really, and I felt between Sarah and Niki they sort of got it running back together again, that is how I can describe it. 

To anyone reading this, I would say get the DVD, read Alex’s book and get all the literature, go on the website, read all about the clinic and listen to these messages from people and then just go ahead, you have got nothing to lose, that is what my husband said because I said I can’t do anything else, he said we have nothing to lose, if it is going to help you it would be wonderful, if it doesn’t, you are not going to get worse from it I’m sure, go ahead and do it.  I just hope that if anyone is reading this and feels as horrible as I did last year just trust that if you put your mind to it, it is hard work at the beginning, there was a few times when I thought I can’t deal with this, just keep persevering and think yes I can do it and look to the future really and think I can get better with this.

As for the future, I am so excited, our son lives in America and we haven’t been able to go and visit for over 5 years now because there was no way I could have travelled that far and my husband booked tickets this morning to go for 2 weeks in September to see my son and we have actually got 2 new grandsons that we have never seen so we are just a bit excited today, so thank you from the bottom of my heart, because it is due to your amazing ability that you didn’t sit back and just give up, you were determined to help others and I think it is just incredible.

Joy shared her recovery story with members of Secrets to Recovery in July 2008. To find out more, click here.