Ungrateful Cow.

Evil cherry tomatoes!

Today has been an exhausting day. I had been up since 1 am so it was never going to be a great day especially when you have the hospital. My lovely mum took me for lunch at the pub to try and cheer me up today, it was a lovely thought but today I just felt like an ungrateful cow. It's not that it wasn't a nice idea, or that I didn't want to be with her it was just that after spending all morning at the hospital on little sleep I was exhausted. I was in agony anyway with my Fibro today and that can even make sitting for a meal very uncomfortable. All I wanted to do was keep getting up to try and stop the shooting pains in my legs and hips. At one point the pain was so bad I burst out crying. What great company I must have been especially as in between the pain my eyes were shutting.
Having Fibro can be like that it can spoil things that you would normally enjoy or want to do. It then can make you appear ungrateful. I was so tired and in so much pain that I only ate half my food and then had to sit and wait for my mum for what seemed like an age. I mean she eats as slow as a flipping tortoise anyway but today seemed like an eternity. Every forkful she put into her mouth was unbearable. It was like the cherry tomatoes on her plate were determined to keep her sitting eating for longer than necessary. I just wanted her to shove them in whole one at a time not cut them in half and dip them in some sauce that she had!
I know it all sounds a bit extreme but until you are sat there feeling so bad then you won't be able to understand it. I was just desperate to get home.

                                    
Hospital.

Today I was back at my follow up appointment for Rheumatology and I took my mum with me partly for a bit of moral support but also as I tend to forget everything I need to say. I saw the consultant who basically went over all my bloods they took before saying that everything else was eliminated and it is just fibromyalgia and everything that comes with that including my hyper mobility. Nothing I didn't already know there. Anyway I managed to get some of my medication changed to a newer type that should hopefully make me less drowsy and zombified at times. Apparently they often don't start with pregablin as it is more expensive than gabapentin. Why is it always based on cost!? She also is asking my doctor to refer me to the fat club at the hospital as the medicines are piling on my weight. Be good if they could at least help in this I mean it's not like I haven't been asking them for the fat pills back again but they wouldn't before so we will see. She also said no reason why the doctors cannot give me the fat pills back again now. She also explained to my mum the fibro is something that I just have to basically live with, which I have been trying to explain to my mum for months that this is how I am and it's about trying to manage it.

                    

I then had to wait ages for the vampires to take some blood to check on my vitamin D levels seeing as they are so low again. The consultant said I will probably need to take calcium and vitamin D supplements for life just like my B12 jabs. Not too bothered about any of that though as I have been on high dose vitamin D for a long time now anyway I just hope my levels have come up.
I am quite happy with how the appointment went as it could have been worse in terms of how it could have gone.

                                

Mad children.

My girls have really made me laugh today. They woke up in one of their made moods singing and dancing round my bedroom first thing this morning. I love it when they wake up in this mood rather than having to drag them out of bed.
It's funny how things can change though as both of them really played me up tonight and didn't go to sleep until 10 pm and there went my early night and I went past the stage of feeling tired. They will not be happy children tomorrow when I have to drag them out of bed for school which is pretty hard to do when your in pain and they point blank refuse!

                             

Getting organised.

This afternoon when I got back from the meal I decided that I needed to catch up on things that I had been putting off and delaying. I started by paying off a load of bills and loan such fun when I would rather be spending my money on something more exciting like a holiday or at least a weekend away or even failing that just some shopping. I want to get my debts down so I seriously need to sort my money our plus I have holidays to save for for next year too! I caught up with loads of phone calls and managed to get myself booked onto a course starting this Friday about living with long term health conditions anything to help myself has got to be worth a go. I feel that I was quite productive and am proud of myself for getting this all done rather than putting stuff off again as usual.

Feelings.

                   

Where's the off switch?

Sleep sleep wherefore art thou sleep?

It's 4:30 am as I begin to write this blog and I haven't been to sleep yet. It's not that I don't want to go to sleep but I am wide awake in pain and have 1001 things running through my mind.

                      

     
Disability and dosh.

Tonight I have money worries on my mind. I either need a winning lottery ticket or a money tree neither of which are very forthcoming. Having a disability is a massive strain on the purse. There is so many things that are hidden extras that you need when you have a disability that you might not think about. As I don't drive I have to rely on public transport and the bus fares can soon mount up even when you are taking short trips. When I am bad I cannot use public transport as much especially if it's longer distances and therefore a lot of my money goes in taxi fares. Money soon goes.

                                                   

As a single mummy I struggle money wise as it is and survive on benefits. When you have something wrong with you that provides you from working you firstly have to go through the battle of getting a diagnosis to enable you to even begin to apply for an disability benefits from the government. Now a lot of people think it is easy to get and claim disability benefits due to what the government has called our 'benefit culture.' Getting anything to do with disability is a massive battle and many people have died whilst waiting to be correctly assessed by the dreaded ATOS who assess what you get. They have a quota of people they have to knock back so many people have to go through months and years of appeals. I am now about to start this dreaded process of claiming disability money and fully expect to be knocked back first time.

This money struggle that I am facing is playing on my mind. Christmas is on of the hardest times of year for everyone financially and this year is one of the hardest for me financially. I need to start getting a better grip on my finances and re look at what I am spending and try and get some of my debts down.

The river dance.  

So tonight as with many nights my legs have been doing the river dance in bed. Restless leg syndrome - RLS is commonly associated with having Fibro and it's one of the things I suffer with. This causes pain in the legs so much that you just have to move them or get out of bed and walk around. I even get involuntary movements sort of like spasms causing the river dance affect.

                              

Sleep quality and Fibro.

Periodic Limb Movement Disorder PMLD runs alongside RLS and it is very similar but only affects night time sleep. It can be quite violent causing intermittent movement during deep sleep. This can be very exhausting and hurts already painful joints.

When you finally manage to get to sleep pain can often wake you up. People with Fibro often fail/struggle to reach stage 3 and 4 sleep stages which are the deepest stages of sleep. 80% OF people who suffer with Fibro can also suffer with sleep apnoea. Sleeping alone I don't know if I suffer with this or not - according to my girls I snore loudly though.

                                 

75% of people with fibro also experience TMJD Temporomandibular Joint Disorder. This causes pain in the face, neck, shoulders and back and often leads to grinding of the teeth. This occurs when sleeping and sufferers clench their facial muscles together and this can lead to grinding of the teeth. This is why I often wake up with pain in the jaw and why my jaw clicks.

Sleepless in Coventry.

It looks like I will be sleepless now as I have given up trying to get to sleep as it's 5:40 am and nearly time to take my morning meds and the girls will be up soon. It's typical I wont even get any chance to nap tomorrow as it's Sunday and we're off visiting my dad and I promised to take the girls to the park by him too. Fingers crossed tomorrow night the pain wont be too bad and I find the off switch to my brain!

                                              

Roller coaster.

Ups and downs.

Since I last blogged I have had a very up and down few days. It has been a very emotional roller coaster that I have felt unable to get off. My week has been so busy with various appointments too that I have been exhausted. I have just woken up from sleeping 24 hours straight I was that tired. 

                                  

Monday.

Monday was the results day for Evie's ADOS test. For more information on this and autism testing see previous posts.  So the results from this were what they call a false positive. She does show some autistic traits but doesn't have ASD. Obviously this was a relief but this was short lived as I feel sad that no one has been able to tell me what is wrong it is so frustrating. I want to be able to help Evie more but at the moment I cannot get the help. She is being referred to CAMHS - Children and Adolescent Mental Health Services. The doctor said she was a very interesting and complex case. They recognised her intelligence level and think that her issues revolve around her being so highly intelligent. She said the higher their intelligence they are often the most complex of children. So no result and another waiting game. It has taken a year just to be told she isn't autistic, back to waiting for yet another referral now.

                                               

Tuesday.

Tuesday I was back at the hospital for a Gastro team. They told me they found a hernia and reflux issues on my endoscopy which I already knew. He then said they found no evidence of celiac disease or pernicious anaemia. They cannot explain my B12 or other vitamin deficiencies that way. It was basically a useless appointment to me I could have been told this at my own GP instead of having to go across the other side of the city to be told this. They have now signed me off. They did say that some of my Fibro meds are not helping my stomach which I already know and can I change them. Thing is it's not that easy. They also gave me the fat talk again. This really annoys me. It is so difficult to lose weight when you have fibro as you cannot physically get to the level of exercise you need to burn the calories. I also had to educate him that I am infact of meds that increase your weight and that I would love to be thinner and if he has a magic wand to let me know!

Wednesday.

Wednesday I have a pelvic scan. They were checking my bladder, ovaries womb etc. I still have a cyst on my ovary but the scan didn't show much else. They also checked my kidneys when I mentioned having another urine infection and my renal reflux. They often check my kidneys for damage but at least this one did it at the same appointment which saved me some time and extra appointment. So I will prob have to have another gyne referral as my pain is probably to do with my Adenomyosis or Endometriosis.

                                           

Sleep.

Having just woken up from 24 hours of sleep I am annoyed that I still feel exhausted. I am beginning to wonder if I have ME/CFS on top of the Fibro as I often can crash out for anything up to 72 hours at a time. This is not good when your a single mummy ans so it means I have to rely heavily on the support of my mum. They say pace yourself but it's not easy when you have a lot going on and you have to go to appointments so then you always seen to suffer a backlash.

Questions.

I feel full of questions about things at the minute and this week has only served to provide me with more. I just want things to be more simple and start getting answers to some things. I see the Rheumotologist again next week so they will get some questions fired at them.

                                

Back to the roller coaster.

So I think the above explains some of why I am on this emotional roller coaster at the minute  I do however feel I am more on a down again. It can be easy for others looking in to say keep positive but when your constantly exhausted and in pain it is not always easy.

                          

 Having a chronic condition can often make you very lonely and isolated and for a sociable person this is one of the things I find affects me the most. It seems as if the world goes by at 100mph and at times I am an outsider looking in on it. It's not that I don't want to be apart of this it's just that when you are limited on what you can do you often get left behind and forgotten about. This is really a hard subject for me to talk about as I actually have to admit the fact that I am lonely. I do think I need to discuss it though as I want to highlight what life is really like and I think a part of that needs to include the emotional side to living with a chronic condition. It can often be all too easy to talk about the physical side as pain is something people can relate and understand, but talking about the emotional side of it can often be embarrassing.

I do feel lucky in the fact that I have my children and so they are good company and fun but as all parents would say you often need adult company and stimulation too. Loneliness is one of the hardest things for myself to deal with. One of the things about going on holiday for me is that I don't feel lonely. I am surrounded by people and can actually interact with them. I think this is one of the reasons why the loneliness has hit me so hard this week is the fact that we have come back from holiday.

I miss seeing people in the real world. Most of my friends are now virtual friends and I would consider them to be closer to me than people in real life. Talking to people online seems to break down a lot of the barriers. Having virtual friends with the same condition as you makes them more understanding and sympathetic to what you are going through. However, it is not the same as having people in real life.

One of the things that happened on holiday was that I was given a hug. Now I know this sounds really silly but I can't remember the last time someone gave me a hug bar my children. Well I nearly burst out crying which is very unlike me. It's funny really how the simple thing of a hug can have such an impact. I mean for God's sake it was only one of the fun stars giving me a hug goodbye on our last night but it got me thinking. This condition can make you so isolated and lonely and I would hate to think how someone who doesn't have children or someone special in their lives would feel. I mean I don't normally get that emotional about stuff but it has had a great affect on me.

                                


Looking forward.
I have finally had a call back from the lady who runs the expert patient programme for people living with long term health conditions and hopefully I should be starting a course near me very soon. She said mid November hopefully. This will be good for me as it is only local so something I can manage to get to and it means I will be able to get out and meet people have some company and interaction with adults.


                                 

I also managed to get a bit of my Christmas shopping done this week.Managed to get some good bargains in some of the sales. I have to get it done when I am feeling up to it as you never know when your going to have a bad flare so better to try and be organised   Spending money always seems to help when you are feeling down. Why can't the NHS provide an all expenses paid shopping spree for us all that would cheer us up in the short term?!


                           

Hurdles.

Knowledge.

For me knowledge is power! I am a person who seems to need to know information, facts and research for ways in which we behave in which we do. I think this probably comes through my love of learning. Having done my level 2 and 3 in counselling I have found this increasingly so. I have found that I examine my behaviours and thought processes more in depth. 

Having being diagnosed with a chronic illness I seemed to be going through what is known as the 5 stages of grief. I then researched this and it is also applied to people with chronic and terminal illnesses. I will try and explain the five stages of grief and how it applies in terms of the five stages of chronic illness and how I am coping or have coped with each stage. For more info specific information on the five stages of grief see http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

Stages relating to Fibro:

                                

Stage 1 DENIAL

Any change or loss in your life can cause denial and being diagnosed with a chronic illness can certainly bring about denial. For some who have been diagnosed it can be that the diagnosis is wrong they must have something else that isn't life long and easier to treat.

I don't think I went through the denial stage as with many fibro sufferers you can suffer for such a long time and be told it's 'all in your head' etc that when you do get a diagnosis you just feel a massive relief. For myself it was as if a massive weight had been lifted off my shoulders and that I was being taken seriously and that I wasn't going mad!

                                        

Stage 2 ANGER.

Denial is fuelled by anger.Anger that you were the one to get this illness. Anger can be directed inwardly blaming oneself for being affected by the illness. The best way to deal with anger is to find an outlet for it. Anger is normal and can take a while to work through and sometimes a small part of anger can always remain with you.

I do find that I get angry at times. I have been angry at myself for forgetting things or being slower at things than I used to be. I find internet support groups my best outlet for how I feel. I can hide behind the screen and rant in a place where I feel safe and know that they understand my frustrations as they have or are experiencing similar. I don't feel that I was at this stage long sometimes I come in and out of a little rant but then don't we all!

                                    

Stage 3 FEAR.

Fear often drives anger. Fear in knowing you can't be cured. Fear is often made worse when you don't know enough about your illness/ condition. The more you know often the more you feel you have some control of it. Fear is the most important stage to work through. Fear can often come back when things get tough, but don't let it take over.

Fear for me was one of the stages I think I started at when I was back and forth at the drs and in the hospital not knowing what was wrong with me. By the time I was given my Fibro diagnosis I already knew I had Fibro and was well read up on it. Sometimes I do find a new or strange symptom can worry me, but I am soon reassured by the groups I am on when I post my worry. I have found that it is better to post your worry than worry about it and bottle it up as the worry can be wiped away very quickly. I do believe knowledge is power!

                               

Stage 4 GRIEF.

This is a very common feeling. This is because chronic illness brings restrictions that others don't have to face. This can be things such as the loss of being able to join in with activities you once enjoyed. Grief can lead to feelings of inadequacy and can lead to withdrawal and isolation. Focussing on activities that you still can do can help to over come this.

Grief this is the stage I seem to keep coming back to. It is my tough stage. I do grieve for what I can no longer do this really bothers me. People with Fibro can often have depression as it is one of the lovely symptoms you get alongside it. Grief can become a stuck stage for a lot of people with Fibro. I think I move out of the stage then move back into it when I realise I have to make another adaptation to how I do things as I can no longer do something like I used to. It can become very frustrating.

                                  

Stage 5 ACCEPTANCE.

Managing a long term illness can bring massive emotional upheaval it can also bring an inner strength that comes with overcoming obstacles.

I have accepted I have got Fibromyalgia. I have accepted that it is lifelong and that currently there is no cure for it. I know that there are things that work better for some people than others and I know that I am not affected as badly as some people can be.

                                     

I also want to add a couple more stages which I think are relevant which follow on from when you accept that you have Fibro.

                                     

Stage 6 ADJUSTMENT.

So you have accepted you have Fibro or a chronic condition and then you have to plan and make adjustments to your life to accommodate your illness.

For me this is about learning to pace. I need to know I can't do everything at 100mph. I need to remember to write things down and ALWAYS check my diary.  I have to adjust to make my life easier now I do have the Fibro. I must be sensible.

                                     

Stage 7 MANAGEMENT.

This is about managing day to day life with a lifelong condition. I must take my meds, listen to my body when it is telling me to slow down, and look into ways to help myself cope.. This means joining support groups, doing expert patient programmes and Fibro group.

Fibro is unpredictable but I know that with support it won't take over my life, it will be a part of it but I am not Fibro I am a person who happens to have Fibro.

                       





                             

Holidays.

Travelling.
Travelling with Fibro can be very exhausting and can get stressful when you travel with children and another disabled person who is my dad. The thing about invisible illness is that you don't look bad therefore it's assumed I should be helping to lift all the cases etc. I did and nearly wiped myself out before I even got there with train delays, cancellations and changes. The journey back wasn't as bad, as no delays but the booked passenger assistance never materialized. I have really worn myself out on the way back as I was flagging already.

Fun filled and action packed!                                        

The actual holiday was a much needed break from the stress etc that we have been having as a family over the past few weeks especially. It was nice to be back at our 2nd home in Weymouth. It's a place where I feel completely relaxed and at ease.

This week myself and the girls never ventured off site as the girls wanted to join in with all the activities that were going on on park with the fun stars. The girls especially my eldest want to know everything and be doing everything that is on offer and being a Fibro mummy it is so exhausting for me.

Out of the whole week we were there I only had one daytime nap on the last day and I was powered by a LOT of caffeine to get me through the week. It probably explains why my migraines have been so bad this week but I don't want the girls to miss out on things just because of how I am.

It's hard being a fibro mummy on holiday as I really want to do more and have more energy for the girls but I think we managed quite well - especially as I didn't have my crutches. I am absolutely exhausted now though and feel like I am heading for a flare due to not getting the rest that I need.

I have also found out that I have developed an allergy to horses/ponies. Both times when the girls had their turns with them my eyes puffed up and started itching etc. Thank goodness I had Lillie's anti histamine with me so I could take some as I looked awful!

Evie on Carnival.

Lillie on Chester.

I am also worried as I have a lot of important appointments in the next week or two and need to at least be half with it for them. My memory is rubbish at the best of times let alone when I am on the point of exhaustion!
                                       
I have had a fab week though and haven't laughed so hard for a while. I love a good holiday where I can go and it feels like there are no expectations of me other than the expectations I have of myself. Sometimes I will however, have to concede that I need to pace more on holiday to try and prevent the post holiday crash.

                                   

 Post holiday feeling.  

We have been back a matter of hours and I already feel a bit lost and empty. I am not quite sure why I feel so down. Could be that it's the end of the season now and I know that that's it till we go back at Easter and it will be all change with fun stars again etc.

I do think it's probably more to do with the fact that I don't really have much of a social life now due to the fibro. The only time I seem to get out is on holiday. It's a bit sad really I'm 29 not 89! All my time and energy is taken up with the girls and then all the flipping appointments etc that I seem to be having at the moment. It completely knocks me for six.

I feel old before my time. I can't even wear heels due to pain and the strong chance that I would fall over when I begin walking. I don't drink partly due to all the meds I am on but also due to the fact that it seems to take me days to recover since having fibro. Sometimes you have to concede that it's just not worth it!

I am also feeling hormonal and tired heading for a flare and that's never a great thing for your mood either. Hopefully this low mood will pass soon, but the holiday just highlights how even over the course of a year or two things have changed for me. You see every so often the Fibro will come along and remind you of all the things you used to be able to do, do with ease and what you used to take for granted.

I am still grieving what is lost and learning to adjust. I will go into the theory behind the stages of acceptance in my next post when I can think a little clearer and have had some time to think and sleep.