Welcome to my online diary about the struggles of dealing with rheumatoid arthritis. I write about about the highs and lows of day to day life in an honest way as possible. I hope to share my experiences with those in a similar position and help them to realise they are not alone. It is a unique postion to be in, to have a condition which most people associate with older people when you are just starting out in life. But together, as we discuss our experiences, we can feel less isolated and alone.

About Me

My photo
Leamington Spa, Uk, United Kingdom
I am 32 years old woman with Rheumatoid Arthritis. The disease came on literally overnight five years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It's been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it. I lost faith in the medical world after several misdiagnoses and inadequate treatment. I then chose to follow an alternative route and have tried reiki, spiritual healing, alexander technique, kinesiology and EFT as I believe there is an emotional and psychological element that plays a part in disease. All treatments have helped the RA though not cured it. I am currently on the Margaret Hills Clinic programme for treating arthritis and this has proved successful so far. I am trying to come to terms with the illness and deal with it rather than fight it. Follow my day to day trials and tribulations coping with the disease and how it affects my life.

Friday, 29 October 2010


The past few days have been horrible!!! My joints have been soooo bad.  I am so desperate to come off the steroids but with the weather is making the joints worse.  I have the worst headaches too and I am sure my body is craving some form of exercise.  Yesterday nothing helped as it was that time of the month.  I was feeling very irritable too.  My thoughts are very negative when I am in pain.  I just lie there feeling very sorry for myself and blame everything I can for getting ill, including myself.  How can I be lying in bed with nothing to  do all day long.  My confidence has all but gone.  If you would have told me 5 years ago I would be housebound I would have laughed.  I used to feel so sorry for my elderly nan as she was housebound towards the end of her life and here I am doing the same.  I am very sociable by nature and I spend all day alone.  This is like a living hell.  I wouldn't wish it on my worst enemy.  It's so frustrating being ill and chronically ill not knowing the cause or cure. It leaves you in limbo wondering what on earth could have caused this illness. 

Yesterday I went to the GP and ask for help.  My financial situation is so complicated as I bought a large house before I got ill and now struggle to keep it.  I have managed to but have jumped through many hoops and loopholes to eventually get the support I needed.  I am in a catch 22 financially because every way I there is a dead end.  I have been to the CAB, phoned every debt line going.  the rules states you can't earn over such and such if you are having financial help, you can't sell your house because it would be more debt, you can't rent out because thats against the rules, the bureacracy bollocks just goes on and on.  The government do not take into account people that get ill during their twenties and they leave you in a poverty trap.  I want to work a few hours but if I do other money will get taken away so you think what's the point.  The government needs to wake up and take into account peoples individual circumstances and tailor help accordingly.  All the financial pressures are putting a massive strain on my health.  Sometimes I feel really bitter and angry that I don't have more support and other times I end up blaming myself.  I have even gone to relatives to ask for help but nothing.

Life is so hard at the moment, I just wonder if things will ever get any easier. 
I found out that I may be able to reduce my mortgage interest rate so asked  the gp for a letter of confirmation.  The answer was no because of this reason and that reason and it was my rheumatologist's job but I am afraid she won't help either and so far I haven't seen a great deal of her.  She has to agree to send a letter saying in a years time I will be fit to return to work.  Can't see it happening myself but I need this so badly to get back on my feet.  A year of less mortgage to pay so I can sort out my finances.  I am just scared of making the worng move.  If I sell this house I am afraid I will never be able to get another house like this but it's crippling me financially.  I am also not happy about going back to rent when I am nearly 32 and with not knowing if the house market prices with rise or fall, it's very hard to know what decision to make. 

I could rent the whole house out but I will lose money from the government as even though they rental would cover the mortgage only, in their eyes it's still considered as income. I feel very desperate at times,  I don't want to be in this house because of all the problems here but I am scared to leave.  I am definitely stuck in a rut.  The house is too big to maintain and the stairs are a nightmare too, I could do with living in a flat.  I wonder what happened to all the friends I have/had, why does no-one call anymore?  Was it my fault, did they get sick of me and my problems or are they just preoccupied with their own lives cause I could sure do with some more moral support right now.
My head is a big fuzz and my emotions are all over the place.  I need to go to bed and get some sleep.  I had to take an extra painkiller last night.

My last hope is my appointment at the Margaret Hills clinic in Kenilworth on Tuesday.  I am hoping and praying that I have the strength to stick to that diet, it's my last chance to have a life again.

I have been back and forth to the doctors asking medication for the depression but haven't got any and I don't want to take them but my moods are so up and down and the moment.  My thoughts are quite dark and sad too.  Then othertimes I am fine.  But they didn't give me any medication so I guess it's not mean to be now and I will just have to fight it out.

Monday, 25 October 2010

Who chose the name Rheumatoid Arthritis?

I can't say it, I am so sick of saying those dreadful words!!!  There is nothing glamorous or even easy about saying Rheumatoid Arthritis.  Not only is the word 'rheumatoid' just so bizarre as far as language goes, it sounds like it something from an other planet!  Then there is 'arthritis' which conjures up images of old people with walking frames and blankets over their shoulders.  So just incase you thought the word rheumatoid wasn't that bad, the word arthritis certainly puts the boot in! AND it's hard to type aswell!

'I have Rheumatoid Arthritis' or 'I was diagnosed with Rheumatoid Arthritis' or I am a Rheumatoid Arthritis patient'.  I have lost count of the times I have said those phrases over the past few years and each time I have uttered those words my stomach has churned with both embarrasment and humiliation.  I don't want to be ill, I don't want people to look at me and pity me or even worse thing I am making things out to be worse than they are because they can't see a plaster or a bandage.  I have come to loathe the word so much especially when you have to explain to people that you are not as physically able as most people and therefore could they make allowances.  Also it's a constant reminder that you are ill, physically disabled, not like everyone else and frankly I could do without being reminded!!!!

I have now stopped saying Rheumatoid Arthritis and will now say something like 'oh I have bad knees' or have joint problems.  I don't want people to pity me, yes I am young, yes most people get arthritis when they are old and yes it's a shame it happened but this is my life and I have to live with this diagnosis.  I want as normal a life as possible, I want to show people that I can still do most things and still live a normal life.

Monday Morning Blues

Monday has come around again and the weekend has now gone.  Today I woke up at 11am and immediately feel guilty for staying in bed so long BUT I am so tired.  I thought the best thing to do after an emotional night of tears last night (it's that time of month) was do my sahaja yoga mediation which helps to clear my head but there is no point doing it before I have my medication either. 

I am trying to come off painkillers at the moment, they should be labelled joy killers too as I am too tired to do anything whilst taking them.
I want to come off them just as I want to come off prednisilone as I feel they are contributing to my weight gain and I am now taking a steady dose of other meds now so I don't think I need them.  But inevitably I am having small flare-ups as the steroids are being decreased even in tiny amounts.

I am very fed up today as I have nothing to do and am too tired and aching to do anything.  I spend all day alone with just me and the television and internet. My partner has been leaving me a list of things to do in order to try and sort out my finances but today there is nothing listed.  I think I will read a couple of books he got from the library about finances.

I have got some rice milk as I know dairy isn't good for the joints.  I am suprised that it's actually delicious and much nicer than I thought so have been having that with cereal but can't quite manage the tea just yet, I need a nice cuppa with normal milk in the morning.

I am at a cross roads, I have looked again at Margaret Hills website and seen all the testimonials and I do so badly want to have a go again.  The only thing is I am scared of failing I am scared of starting it and then 'falling off the wagon'

Sunday, 24 October 2010

Swimming is the best!!!

I went swimming yesterday and felt so fantastic.  I was reluctant to go as it's a public swimming pool and the last time I went there (about 4 years ago) there was one main pool.  After lots of indecision I went and so glad I did.  If you suffer from R.A swimming is most definitely the best form of excercise.  I loved the fact that the water was supporting my body and it didn't hurt!!!! The baths had been revamped and had a log flume, smaller pool and even a jacuzzi and sauna!!! First thing I did was go on the log flume as I love anything like that.  Although it was a bit tricky getting down onto my bottom but it was great fun when I did. 

I stayed in the smaller kids pool, I prefer to just swim anyway I like and get bored going up and down the same swimming lane which is why I stayed where I did.  I swam about like a little child paddling for the first time.  I was doing breaststroke and found it quite easy to do.   Another good thing was that the cost for disabled people is £2.20 instead of £3.70 so this is going to be affordable for me to do on a regular basis.  As with most new things my head ran away with itself and I started trying to organise coming 3 times per week and bringing a friend with me.  However from past experience I know I was running away with myself a bit so decided to try once a week for now, which is more likely for me to stick to if it's managable.

We came home and I felt sooo much better totally revistalised.   This morning was a different story and parts of my body ached from using muscles for the first time in a LONG time.  Still I am glad I did it.  I went to bed at 2am as I am a bit of a night owl so on weekends like to stay up late watching trashy tv.  I awoke at 1.30pm feeling like I haven't even slept for an hour.  This is normal for me at the moment, I am soooo tired even when I wake up.  I am starting to wonder if I may have thyroid problems.  I recently went to the doctors and spoke about my weight gain and he gave me a blood test form to test my thyroid.  So I have a check on the net today and would seem I have many symptoms similar to hypothyroidism like fatigue, flaky scalp, hair loss (though not major) and weight gain.  I am going to book an appointment with nurse tomorrow to get some bloods done.  I am panicking a bit about it but it would actually be a relief to find out these symptoms had an actual medical cause.

My joints hurt today, I am coming down off predinislone (steroids) slowly but still having flare-ups.  I decided to pull my old book out the bookshelf.  It's called Margaret Hills 'Treating Arthritis'  She was a sufferer of R.A that found a cure through diet and went on to open a clinic and cure thousands of people.  She is no longer alive but her daughter runs the clinic.  I feel a bit of a failure that I didn't manage to stick to the diet and only lasted 3 months but it involved drinking cider vinegar 3 times a day. 
I am getting desperate though.  I don't want to waste my life sitting around watching tv, I want to start a family at some point.  BUT food is such a huge source of comfort and relief for me that it feels very bizarre to stop doing the one thing I really enjoy in life which is eat food that I enjoy.  Having RA it's one of the only comforts I have is to munch on a delicious jacket potato with cheese and coleslaw.  I have never been that good a disciplining myself when it comes to food.  I seem to thing I 'deserve' something naughty but nice too much.  Or I deprive myself which then leads to bad habits.

But I need to do it this time.  My partner has promised me he will pay for me to live in Barcelona for 3 months. (I lived and studied there years ago and am in love with this place)  I have every incentive I need BUT I know what I am like.  I will try very hard I know but the diet has to be taken for about 2 years.  This is my last hope I feel. 

Now I am going for a small stroll in the woods to clear my head of these headaches I have been having.  Bye for now.

Saturday, 23 October 2010

Coping with Rheumatoid Arthritis

It's raining today, oh no, the pain is worse.  I just lay in bed this morning 20 mins after I woke to mentally prepare myself for dragging my body out of bed.  When I finally did I knew it was going to be a bad RA day.  Why do I live in a house I ask myself? They are nightmare for me.  Before I became ill nearly 5 years ago I used to like the stairs as they kept me fit and trim but now I loathe them.  I usually have my clothes downstairs and attempt the get dressed after the morning pain has gone.  Today all my clothes have been washed and ironed and put up stairs so I have no choice.  But I have bought some really comfy new jogging bottoms, they are velvety to the touch so at least one thing about getting dressed is good.

My head has been hurting too, like a fogginess.  Went for a walk yesterday but couldn't clear it, wonder what it is, could it be the heating now have moved into the winter months? Have tried drinking more water in case it's dehydration.
I catch a glimpse of myself in the mirror and it looks bad.  My tummy is huge now much bigger than it ever was and I have given up trying to lose weight for the moment so the inevitable has happened, more weight has piled on.  I am really frustrated about my weight.  I have gone from 30 mgs steroids to 3mgs but yet the extra weight hasn't shifted.  I heard someone mention that it takes a long time for prednisilone to leave the body but I am 3 stones heavier than my natural weight.  I know I am less active but I get upset because my diet really isn't that bad or excessive.  Still thats the least of my worries but it's the one aspect of my life that I always seem to focus on and also the one that I use to measure my self worth - my weight. 

It's funny because when I recently looked at the pictures of me before I got ill, I cried and cried and cried.  Oh my God, I was so beautiful, so gorgeous and lovely, so young and innocent and yet that seems like such a different person to me now.  But even then I thought I was too fat and too this and too that and not good enough and couldn't see what everyone else saw so it is a self esteem issue but it has definitely got worse the more weight I have put on.  It's the way I perceive myself and it's not good at the moment.  When you have to go for joggin bottoms because they are comfy but also because you can't face going into a shop and buying your new correct weight.  To make matters worse, I went into a trendy fashionable shop the other day, it was like recapturing the old me that loved to shop and look at nice clothes.  Guess what, they didn't have my size, NOR the size below so I walked out sheepishily as though I had committed a crime of daring to think that a cool and trendy shop like this would consider making sizes for slightly larger figure.  I left my diginity there and that marked the end of my shopping trip.

Back to today.  My partner is talking about swimming.  Part of me thinks it's a great idea for me to do some light exercise but the other part is dreading going to a public swimming pool, having to walk around on my swimsuit while other people gawp at me.  I know this is mainly in my head, the idea that other people would even care what I look like but still, my mind is thinking away.  It's ok for him, he is as slim and agile as they come, he seems to have a natural confidence in himself and his body and really couldn't care less what others think, so I could perhaps steal some of his confidence for the afternoon.
I have taken my meds now, the steroids, the painkillers, the folic acid, then the methatrexate on a wednesday and adalimumab on a thursday, good grief I am medicated, placated and intoxicated up to the eye balls.  I loathe taking the meds, I can't bare the think what they are doing to my insides but at least they help with the RA.
I saw the nurse this week and have been signed off as 'in remission' for the year by my new rheumatologist,  huh what a joke.  I though transferring to a female rheumy would mean more care and concern rather than less.  My medical care has been less than adequate to say the least.  But what can they do, the RA is as under control as can be I guess and I am at the point now where I can predict exactly what they will say anyway.  So I feel like I am dealing with this alone really, except my partner who is wonderfully caring, supportive and understanding, the opens jars for me, helps me get dressed and is generally very helpful.  Well that's it for now, will write again tomorrow.

My Rheumatoid Arthritis Diary