Tonight I HAVE to get the last of the Christmas wrapping finished. I am sick to death of wrapping and feel like I have turned into some sort of Gangsta Wrapper the amount I have wrapped. I mean why are children's things suck odd awkward shapes to wrap! My thought on this is that it's so you use more wrapping paper. It wouldn't be so bad if when it actually came out of the box it was that size but it's normally fully of stupid packaging and those tie things that take you forever to get off on Christmas morning!
Doing too much.
It's that time of year when as a parent you are pushed to breaking point going at 100mph trying to get everything ready in time. For a fibro sufferer this only means one thing... danger flare ahead! I didn't get much sleep last night and haven't been sleeping well again as of late so I was awake from 12am.
The morning started well, I made a jelly with Evie my youngest got our baths and hair washed and we were all set to go. We got to town and went to the bookshop to collect a book that I had reserved, and the computer said I had already paid so who was I to argue and I walked out the book shop with my free book. So far so good.
Evie decided she wanted to go to pizza hut for lunch so I thought it would be nice. I enjoyed my lovely lasagne whilst Evie munched her pizza. I started feeling very tired and dizzy, sick and faint. I took Evie to the toilet and had just enough notice to warn her what was about to happen. BAM next thing I know I am on the toilet floor and Evie is holding my hand. 2 lovely ladies we're asking if I was ok. Cue me turning as red as Santa's coat.
I don't know if it was that I didn't get much sleep, pushing myself or the fact that I am due for another B12 jab soon. When my iron goes low I have a fainting problem. I think it was a mixture of both. I rang my mum and sat in pizza hut waiting for her to get there ( luckily she was in town anyway). I then came home and slept. 7 hours solid - I must have needed it!
Better get on....
So as I get back to the last of the wrapping and go and pop some more pills for my aching body I will leave you with the following it aptly describes how it is. The shampooing bit especially!
Welcome to my world!
What does Fibromyalgia feel like?
Fibromyalgia is a very tricky, elusive disease. It comes and goes in cycles, attacking different places in your body without any seeming pattern or sense to it. One day you’re feeling pretty good, and the next day you’re feeling so dreadful you can hardly hold a coherent thought together, much less be productive and cheerful at your work.
I read a great description of Fibromyalgia as feeling “flu-like.” Think back to the last time you were “coming down with something.” It’s that day before you start showing the obvious symptoms of sneezing, coughing and fever. On that day before, you just feel so generally “blah,” but you don’t know why. Your voice sounds fine. You’re not sneezing. You don’t have a fever. You just feel so tired, and achey, and awful all over. (The medical term for this is ‘malaise.’) You feel so poorly it is difficult to concentrate at work. Heck, it’s difficult to concentrate enough just to drive to work, and you feel totally spaced while driving. You feel so awful you just want the day to be over so you can go to bed, and hope that tomorrow will be a better day.
That’s Fibromyalgia. Sometimes the next day is better. Sometimes it’s the same thing all over again. And, sometimes, despairingly, it’s even worse.
Think back again to that pre-flu day, and how difficult it is to do the most ordinary things—like just getting out of bed.
The day goes something like this… Your alarm goes off, and you’re still so tired you can’t believe it’s morning already and you’re actually expected to move. You’d give just about anything to sink back into your mattress and not move all day. You hit snooze so many times, adrenaline finally kicks in a bit, screaming: “Now you’re running late! GET UP!!!” You depend upon that adrenaline to help you get out of bed, and stumble to the shower. You can’t believe how much it hurts just to walk those few steps. You look longingly back at your bed. “Don’t even think about it!” screams your adrenaline, pushing you toward the shower again.
You don’t want to strip out of your pajamas. You feel chilled and stiff all over. Getting naked and soaking wet seems so very unappealing at the moment. You run the shower, getting it as hot as you can stand, and hoping the steam will warm the bathroom up a bit. You begin to peel of your pajamas, wondering at how much it hurts just to lift your arms over your head, and how stiff you feel as you bend down to remove your bottoms.
Finally, you step into the shower. “Get moving! You’re late! You’re late!” screams your adrenaline again.
The water feels overly hot, but you still feel cold all over. You reach for the shampoo, but it hurts to raise your arms over your head. You decide to just stand there for a while before trying to shampoo your hair, hoping the hot water will ease your still, aching muscles up a bit. You close your eyes, and almost fall asleep again right there in the shower.
“Up! Up! Up!” yells the adrenaline again, “This is no time for a leisurely shower! Get washing!”
You reluctantly reach for the shampoo bottle again, bracing for the pain of lifting your arms over your head to wash your hair. It’s painful and uncomfortable, but you grit your teeth and get the job done. You reach for the soap to wash your body. You can wash your mid-boy OK, as that doesn't involve much bending or reaching, but you dread reaching down to wash your legs and feet.
You consider skipping this step, thinking maybe the shampoo suds dripping down off your head will count as a full-body wash.
“Don’t be gross. Just wash! Late! We’re late!” screams your adrenaline.
You reluctantly bend to wash your legs and feet, amazed the amount of pain this causes in your spine and leg muscles. Just the act of bending over makes you suddenly dizzy, and you grab onto the walls of the shower to remain standing. You try to ignore the dizziness as you wash, dreading the head rush you’ll get as you straighten up again.
The head rush hits. Swarms of black dots swim in front of your eyes. You put both hands out to brace yourself on the sides of the shower, until things steady again.
You've done it. You've finished your shower. Now, only 16 hours to go and then you can go back to bed again…
Now, imagine this going for ten, twenty or thirty years.
And, all through this time, you look like “the picture of health.” Your cheeks are rosy. You certainly don’t “look sick.”
You make an appointment with your doctor. Surely feeling this poorly can’t be normal? (And, surely this is fixable!)
Your doctor checks you over. Every blood test comes back as perfectly normal. Once again, you appear to be “the picture of health.”
“Just stress. Try to relax,” says the doctor, “Get some exercise. That will increase your energy level.”
Exercise?! Just getting out of bed this morning seemed like a triathlon event. And, this crazy man wants me to exercise?! It’s a miracle I was even able to get dressed and make it to this doctor’s appointment—this appointment where I hoped I’d get some answers…
Welcome to the world of Fibromyalgia.
You wonder yourself—how could you look so normal on the outside, and have nothing show up on any of the doctor’s tests, yet feel so abnormal on the inside?
Surely, the doctor must have missed something! So, you make an appointment with another doctor. And, then another. Perhaps some doctor along the way begins to prescribe some drugs for you. Some anti-depressants that make you feel even more tired, and make you put on weight. And, you weren't depressed to begin with. The only thing bumming you out was how awful you were feeling everyday…
And, now you’re stressing out because you’re falling behind at work, and the house is a mess, and your spouse is getting frustrated since you’re irritable all the time, and just don’t seem to be “snapping out of this thing” or getting better. And, you never feel like having sex anymore because you’re always so tired, and achey feeling, and just want to sleep in your bed, not doing anything energetic in it…
And, when your friends call, you make excuses not to go out, until finally they stop calling…
But, maddeningly, this “illness” seems to come and go without pattern or warning. There are some days where you feel almost normal again. So, you think you’re “getting better.” Or, that latest pill (or homeopathic treatment you’ve tried is actually working, and you’ve found “it.” The right treatment! The answer to this puzzling mystery. You’re getting better now! You’re overjoyed, and tell everyone of this wonder cure you’ve figured out that improved your energy and dispelled your malaise.
You’re thrilled that things are somewhat ‘normal’ again, and throw yourself back into your work, trying to catch up on everything you’d fallen behind on. And, you throw yourself back into your housework, trying to get all caught up there, too, doing massive piles of laundry, and cleaning everything in sight. And, you call your friends again, and invite them all over, to make it up to them for blowing them off before. And, everything seems OK. Your wonder pill seems to be working and everything seems like it’s going to be OK…
Then, it hits again. You wake up one morning, and once again feel like you’re getting sucked into the mattress. It is so very, very hard to get up again. And, when your bare feet first touch the floor, the bottoms of your feet feel so tender and painful. Like someone was whacking at them with a baseball while you were sleeping.
“Oh no, not again,” you despair, wondering what type of doctor you should see this time. What is causing this?! And, who should you see? A podiatrist for your aching feet? A chiropractor for your aching back? An internist for your irritable bowels? A general practioner for your overwhelming fatigue? Or, maybe a therapist? I mean, how can you look like the “picture of health,” and feel so bloody dreadful!
(You begin to hate that phrase “picture of health.”)
You begin to doubt your own sanity. And, you feel angry at the doctors for not being able to give you a diagnosis, or provide any answers that make sense.
“It’s not stress!” you think angrily. “The only thing stressful in my life is how awful I feel, and all the problems that causes!”
And, now your house is half-torn apart from your cleaning rampage, and you have all those friends coming over for dinner, and you just took on an extra project at work to make up for the stuff you’d half-heartedly completed before. How are you ever going to do all that when you can barely manage shampooing your hair?!
Welcome to the world of Fibromyalgia. Perhaps one of the most elusive and maddening diseases on the planet. AUTHOR UNKNOWN
Today I went to the benefits advice centre for a meeting with one of the workers to get help to finally complete my DLA form. I had to make a list of things to go on the form including medications etc. Doing the preparation beforehand was tiring but it was worth it as it made things easier even though I had to go with a list as long as my arm. One thing I found when we we're doing the form was just how much I do struggle at times when it is broken down. The lady who helped me complete my form was very understanding, and I just hope now that my claim doesn't take too long to process and I get a favourable outcome. I know I could really do with the extra money that it brings.
More appointments.
I have also had another doctors appointment. I have such a great GP and I had a good chat whilst at my appointment and I never feel rushed. I have now changed one of my fibro meds and moved onto a newer version of it called pregablin I just hope this helps. My vitamin D levels we're low again and I am back on high strength tablets to help bring that up. He also went through my latest rheumatologist's letter and it seems I have now been discharged, would have been nice if the rheumy told me herself at the appointment.
Evie has also had her appointment at CAMHS (children and adolescent mental health service). We didn't have enough time so we have an appointment to go back in January. I am not sure how to take this meeting as we were going through her life and things that could be impacting on her. I really don't want them to try and pin it all on my health as there are children who experience a lot more and are fine. They did stress though again that she is highly intelligent. I suppose this is something we will have to wait and see with.
Ups and Downs. I have been feeling quite jolly getting into the festive cheer and excitement of Christmas. I have been busy wrapping and trying to get everything ready. I have my last few bits to wrap later then I am done. phew!
The downs for me have come in the form of a couple of falls. I don't know if I have been overdoing it or that my B12 levels are getting low again. I am due for another B12 jab in a few weeks so I am hoping that is just it.
Christmas Lists. Whilst the girls have made endless lists for Santa and others have long wish lists I just hope that I have a flare free Christmas.
Peek a boo! It's been quite a while since I posted last. I really suffer with the fibro over the winter and I almost hibernate due to the affect the cold has on me. I have also recently spent some time in hospital having my appendix out, kidney infection and burst ovarian cyst. It all seems to come at once! This in turn has affected the fibro and knocked me for six.
The past few weeks I have also been trying to fit in school plays/ assemblies, appointments and trying to get organised for Christmas. I have to say my youngest Evie was a fab angel and sang her little heart out and my eldest Lillie played beautifully in her guitar assembly! They made me one proud mummy!
The weeks all of a sudden seem to have flown by and there is just over a week left! Thank goodness for internet shopping. I can shop in the warm, at a time I choose which is normally the middle of the night when I can't sleep and not have to worry about hurting myself carrying any heavy bags home. God bless the internet!
Lack of pacing. So it seems I am not pacing myself properly. I have fallen behind with what I needed to get done and then tried to play catch up and cram it all in. It hasn't worked. However, I don't want to not do things with my children so sometimes it's the price you have to pay. This weekend we enjoyed a trip to see Santa and also a trip to Narnia to see the snow queen. The girls really loved it. I didn't enjoy queuing for over an hour just to get on the sleigh ride to see santa. We also have been out for a meal with my mum which was nice for the 4 of us to all go out together.
Our Trip to Narnia!
The sleigh ride we took on the way to Santa's house.
Santa!
As much as the above activities tired me out it was worth it to spend some time with my children and seeing them enjoy the magic of this time of year! When your not well you have to try and do these things when you can with the children which is why I tend to end up over doing it then. However, at least when I have over done it at least they are back at school so I can rest!
Clearing out the bad.
My last post was short and brief mainly as I was angry and upset over things that we're posted on my facebook wall by my so called friends. As with many Fibro sufferers we face judgement from all angles even those who we 'think' are friends. Whilst it was very upset and hurtful at the time, people making out like Fibro is nothing and that you make stuff up I am now past it. I have had a friends clear out and got rid of negative people like that. I don't need that in my life, I was in hospital and I should be able to comment freely on my own status about how I am so I can update friends and family. It did however, show me who my real friends were!
Sadly I am not the only person I know that this has happened to. I am sick of seeing people tell people to do a 'little voluntary work', 'get out more', 'make more of an effort' and the worst of all 'it's all in your head'. If you can't say anything comforting it's better not to say anything at all!
'Tis the season to be Jolly....'
This is sometimes easier said than done. A lot of Fibro sufferers are worse in the winter and I am one of them. I have been feeling a bit down but I don't think this has helped with everything that I have had going on. I also am waiting for my doctors appointment as yet again I have low vitamin D levels despite being on a high dose of vitamin D. I also am changing my meds to try and help with the pain and tiredness. As with all things trying new fibro meds is a lottery what works for one may not work for another. I can but give it a go. I have been suffering lately with my Endometriosis and Adenomyosis and so hopefully I can get either referred to gyne clinic or some better meds for that too.
I have however turned a corner and am now fully into the Christmas swing of things. We have recently had a photo shoot which I loved and had some fab pictures of the girls and that helped to cheer me up! I have been busy wrapping presents which has seemed like an endless task. I wish i could remember how much I hate wrapping when I buy all this stuff! To be fair I have done most of it now but I am waiting for more deliveries to come.
It's the dreaded food shop that's the worst and that I have to do in the next few days. I was going to go tomorrow but my leg is playing up at the min so unless I take my mum for help and go on the granny mobile (supermarket electric wheelchairs) then I can't go tomorrow. Whilst it is great fun going on it and helps me enormously I hate the looks I get whilst I am in it. I think people think I am messing about in them seeing as I am only 29! I feel self concious in them, especially if I see someone from the school.
Some of our photo shoot pics....
One thing that never changes.
Throughout it all there is one thing that never changes and that is how much I love my girls. They are my world and they make me so proud of them. They cope remarkably well with me and my health and for that I am thankful. They can also be very helpful. My eldest will often comment on my limitations and my disability not in a nasty way but in an understanding and mature way. I just hope I make them proud!
This past week I was rushed into hospital and I had my appendix removed and they found that my pelvis was full of blood probably from another ruptured ovarian cyst. I also went in with a bladder infection and it developed into a kidney infection due to my renal problems and complications.
I made a facebook status update on my health and I was very upset to find this was hijacked and my children were brought into this. I am so upset about this and the fact that I couldn't delete posts until I had to discharge myself from the hospital due to it all. I made the post to inform friends and family know how I was instead of having to inform people with the same message over and over again.
I haven't got the energy to write anymore tonight as I am too upset and poorly. Hopefully my next post will be a more happy post and not an attack on a disabled person with FIBRO!
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.
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!
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?!
