Monday 12 October 2015

Dysautonomia Awareness Month

October is  dysautonomia month, for anyone who doesn't  know what dysautonomia is, its an umbrella term used to describe several conditions that cause a malfunction of the automatic nervous system (ANS) The ANS controls the automatic functions of the body we do not consciously think about such as heart rate, blood pressure, digestion, temperature control and kidney function, people living with several forms of dysautonomia have problems and trouble regulating these systems which causes our bodies to go haywire. Heart rate blood pressure and breathing are all effected. The condition I have is inappropriate sinus tachycardia (ist)

When I was diagnosed with ist after my second failed ablation, my cardiologist explained to me that nobody knows what exactly causes ist, and the main question always seems to be whether ist represents a primary disorder of the sinus node, or whether instead it represents a more general problem of the autonomic nervous system the condition dysautonomia, doctors all have different views on ist some still even believe the condition is related to anxiety, but as my cardiologist explained to me it was something that needed more research done to figure out the actual cause and since there's very little known about it there's no cure at the moment and its all trial and error on managing symptoms with medication, ablation of the sinus node itself can fix ist but its a temperately fix and the heart heals itself and the symptoms will return, or for some like myself end up needing pacemakers.

Suffers with inappropriate sinus tachycardia suffer from a range of symptoms such as breathlessness, fatigue, syncope, pre syncope, dizziness, blurred vision, sweating and blood pressure problems. Ist seems to effect healthy young females more than men. Getting diagnosed with ist is quite difficult and for me took over a year and endless tests such as ecg's, 24 hour tapes tilt table tests, scans, x-rays, checking my adrenaline levels by peeing in a large bottle for a whole day which was not fun and also an electrophysiology study (ep study) were all that was found was how my heart was fast constantly without a reason for it to be.

Everyone with ist is effected differently some people have very little symptoms were as others are so severely effected they have to give up work etc, I am lucky for the reason that even though ist does effect my life a lot I am blessed to have a good cardiologist who has always helped me mange my symptoms and after 3 failed ablations has put me on the list for a pacemaker which won't cure it but will help manage the symptoms and I know throughout the ist community most people aren't as lucky as me and most are just told to get on with it.

 A day in the life of a Ist sufferer…

You wake up around 7ish; you never feel refreshed in the mornings no matter how much sleep you get. It feels like you have been out drinking and partying all night as your head is absolutely pounding. You ’have only slept for about five hours as you have insomnia, and you wake up on many occasions with your heart pounding in your chest and the chest pain you actually could swear your dying. It takes you ages to find the will to get up, over an hour in fact. When you sit up,  that’'s  when your head really starts to pound and the room spins. You open the curtains, the light feels so bright it'’s  painful and you experience the bright flashes because you have terrible light sensitivity and the awful side effects from ivbradine make your eyes hurt more. You stand up to go to the toilet and your heart immediately starts pounding. By the time you’ have got to the toilet you are really out of breath, exhausted and weak; you need to sit down before you do anything else.

Making breakfast is pretty exhausting. Your heart just gets faster so fast in your chest. It'’s probably beating about 150bpm and eating it, well that just makes your heart beat even faster You can try and read or watch tv but you can only manage this for a very short period due to brain fog. Coffee is out the window as that will just increase your heart even more so you either drink water or green tea and swallow your medication.

You dread showers as they make you feel absolutely awful, The shower is cold as heat makes your heart rate increase further which is definitely not what you want and standing in the shower is a task when you feel dizzy. You sigh with relief when the shower is over. They say having Ist is like running a marathon all day every day. But showers feel like you have added an additional marathon on top of the one you were already running. You now have to rest flat out on the sofa to ease the symptoms from the shower.

Drying your hair, well the heat just makes you feel even worse and all the effort of brushing your wet tangled hair, leaves you even more exhausted you could lie down again, getting dressed well that just uses up some more of the little energy you do have left and bending down to put your socks on your freezing cold feet makes you feel faint.

Lunchtime feels much the same as breakfast. But except You’ are  even more tired and weak it feels like you’r forcing yourself to make a sandwich.. You wish you could call your friends, but you are too tired and it would probably cause you to feel worse due to over-exertion.
2pm … You’r wrecked. Time for a sleep. Back to bed you go being in bed is just amazing, It’'s probably the only time your heart calms down a little to even 100bpm if your lucky
4.30pm Your husband gets home from work. It'’s so nice to talk to someone and in my situation help me with Kian feeding him and bathing him.
7pm. You feel so rough now as your symptoms just get worse the more tiered you get You’r dizzy, fatigued feel sick and your heart just wont stop You cook dinner
By 7:30pm you’r too tired to do anything. You want to go to bed there and then but it'’s too early and you would’n't sleep. So you curl up on the sofa and try and watch some telly for me its catching up on hollyoaks or pretty little liars.
Bedtime involves falling into bed exhausted, weak and frustrated feeling like you have achieved very little.
Can you imagine living like this everyday? It'’s probably hard to imagine if your so well. But for people with ist almost everyday is living like your running a marathon, and for me that is how my life has been. You have good days and bad days, bad days when you faint and you can barely get out of bed and good days even though your heart still races you do have energy to do things but its still difficult and I like to tell people I can and I will but it may just take me a little longer.

I really hope this provides a better understanding of dysautomania and ist and you can help me spread awareness by sharing and as I have said before hopefully one day more research will be done on ist.

                                                       Love and Hugs

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Thursday 1 October 2015

Surviving motherhood with a chronic illness

Being a mum is one of the most greatest gifts in life and is full of joy  but it comes with its fair share of challenges, but when you have a chronic illness, parenting has a whole new set of challenges and worries, along with new highs and lows, not just yours but there's, repeating the word no a million times, dealing with lost shoes, socks and dummy's, the never ending chores and washing pile, the temper tantrums at bedtime and when they cant get there own way, can take its toll mentally and physically, but how do you look after a baby when you can barely look after yourself some days, and just want to sleep the day away, how can you juggle  doctor, and hospital appointments and a baby all at the same time. A few times I had been called superwoman for doing it all myself especially after my ablation, being to stubborn to ask for help and support or simply because I feel guilty leaving Kian , but if there's anything I have learnt you have to be well enough yourself to look after them, like on a plane the cabin crew use the ' fit your own masks before helping others' and that's such a big thing when it comes to being a parent with a chronic illness, and its took me a long time to actually find a balance with the whole spoon theory and being a mum, you can't just take a nap and gain some spoons back your on the job 24/7, no coffee breaks except for a good nights sleep if your lucky and its such a true saying of needing eyes on the back of your head.

 When I was pregnant, everyone would go on about the labour and  birth and I spent my whole pregnancy absolutely terrified, preparing for what was about to come, from the excruciating pain to becoming a shell of my former self , but labour is the easiest part you can take all the drugs to help ease the pain of labour and having your baby like everyone says you forget the pain, crying because your actually happy is something you can't control the first time you set eyes on the bundle of joy you carried and felt wriggle inside you for the 9 months , but nobody warns you or prepares you for how difficult and challenging being a mum is, there's no drugs for that and being a sick mummy means the road is even more bumpy but its all about learning and doing things a little different.

I wanted to share some of the things I do and that's helped me with my heart problems, It is not a choice to be a parent  living with chronic problem, You did not choose to be chronically ill, so get rid of any guilt that is eating away at you, you wont always be the best parent, partner or friend but nobody is  perfect, Remind those around you, especially the children in your life, that you love them and that you are there for them. It may not be in the ways that you had originally planned or hoped, but it is no less valuable or meaningful, a cuddle or reading a story wiping the grazed knees, saying I love you and above all just being there when they need you is the most powerful thing you can do as a mum Take each day as it comes and let the expectations of what you ‘should’ be doing fall by the wayside. Try to live in the present and find the balance in your life, focusing on all the good things. This attitude will  help you go a long way towards maintaining a positive outlook to being a mum with a chronic condition.

Its ok to ask for help, it doesn't make you a failure

I was never one to ask or admit I needed help and always tried to do it all on my own, the fear that it made me a bad parent the thought of failing Kian but not asking for help just made my health worse
I was exhausted mentally and physically which all just made my heart ten times worse which just meant I ended up in hospital or to unwell to look after Kian at all, and it wasn't nice been stuck in hospital away from him for a few days, were if I had just accepted or ask for help in the first place I wouldn't have became so exhausted So I guess what am trying to say is rule number 1 it doesn't make you a bad person asking for help if you need it, everyone needs  help and by asking for help its helping you which in turn is also helping out the little one, and something I learned is nobody judges or thinks any less of you by asking for a helping hand.

Find the balance

Parenthood and chronic illness becomes a huge part of your identity and both can fight for control over your whole life, your time, energy, and some days, sanity, and its frustrating, Kian only being a baby he doesn't understand so I learned I can't blame him when I do want or need an extra 5 minutes in bed or a rest and just leaning to adapt helps, I found taking him along to a local play cafe were its all mats and baby proofed I could let him crawl about  and play and I could sit on the comfy  sofa with a cup of tea and just switch off for that 5 seconds without the worry of him hurting himself, and the added bonus there's other children there which meant a cup of tea without a baby grabbing onto my leg demanding me to play so always make sure that you take care of your own personal well being, as well as caring for others these are all important to finding the balance.

Get the extra support that's out there

I was amazed at how much support is out there for mums and dads who do need extra support wither it be down to an illness being a single parent or even just finding the whole thing difficult there's so much out there from places to go and speak to someone, wither it be lacking confidence to go out and do things, or just to talk to a friendly face, there is support were you wouldn't be judged health visitors and your own doctor can guide you in the right direction, even reaching out to other people via support groups who are going through similar struggles  can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice, and its a great way to meet new understanding friends.

Know your limits, don't over do it

If you are having a bad day or you feel like your running low on spoons order a  take away for dinner ignore the house work  it can all wait. Your health and well-being are more important than a dirty-dish-filled sink or a messy floors,  don't focus on the negatives this is understandably more easily said than done, but understand that you are not your illness. The ability to find some good in even the smallest things can change your life on a daily basis, its amazing how changing your mind set can help mentally as well as physically Rome wasn't built in a day and if you start looking at life from that view you will realise you will get there eventually just knowing your limits and boundaries.

Limit children to one baby proof room

Limiting small kids to one room and baby proofing it can make things manageable when your having a bad day, I found getting down on the floor to there level and hunting and moving anything and everything that could become broken or go in small mouths and putting a stair gate on the door, I didn't bother with fire guards instead blocked the fire place and TV with the coffee table and large toys that stopped Kian been able to get through, yeah my living room looks so untidy with toys and things everywhere but it makes it great for a day when you need to lie back on the sofa and you can still keep little ones in your line of vision and buy using large toys and things is also saving the cost, you will feel like superwoman not only managing to lie down to feel better but also managing to look after the little one to.

Learn to put your needs first

I know this sounds such an awful thing to say and obviously being a parent your child is your number 1 priority but be assured, it is a good step in achieving optimum levels of health, both physically and mentally, You cannot be your best for others if you are not your best for yourself. Find time for a quick bath, listing to some music just doing anything that you enjoy doing yourself wither it be when the kids are asleep or letting the hubby take over for a night putting your needs first will improve your health its amazing what recharging your batteries can do.

Kids get bored at appointments

Having a chronic condition means the endless trips to appointments, its no fun getting an ecg done and having a screaming bored baby in the pram, I always try to get someone to look after Kian which is the easiest thing to do but isn't always possible and on many occasions I have been trying to listen and discuss my heath with doctors and Kians been crawling round the room, sometimes I have had to feed him a bottle just to get him to sit and sometimes I have even found myself apologising to doctors for Kian's behaviour but there kids they get bored hospitals are warm and stuffy so who can blame them, one tip I always found was giving Kian a new toy to play with it doesn't have to be anything expensive, and its normally the small silly things they like the best like Kian's favourite is spoons or anything that makes noise and that helps see him through the appointment, there's always the bonus that everyone is aways so friendly and chats away when you have children with you, and on some occasions Kian has even got some penny's for his piggy bank, so I suppose it isn't all bad if you do have to take them with you.

Don't be afraid to go to groups.

This was one I wish I had done sooner with Kian, just because you hear the word toddler groups etc you think running around 3 year old's but actually there's something out there for all ages and by getting out meeting new mums and children is such a good way to discuss parenting its also good for the kids to meet other children and learn to share etc from a young age and I found also kept me sane because it can be a long boring day when you do feel well enough to venture, I found everyone was so friendly at groups and if I was left sitting alone the teacher of the group would always come and make  chat anyway and by going to one group you learn of others and its great fun playing with messy play and getting involved it kills a few hours and keeps the kids amused,  places like the library, museum and park are also good and totally free or the good old favourite a walk, all the groups you do pay for are mostly small donations so one week if you are having a bad day it doesn't matter if you don't go.

Always remember the struggle won't be forever,  so don't ever let a chronic condition stop you having the greatest gift in life and that is having someone call you mum.

                                                           The last time

From the moment, you hold your baby in your arms, you will never be the same, you might long for the person you were before when you had freedom and time and nothing in particular to worry about.

You will know tiredness like you never knew it before and days will run into days that are exactly the same full of feedings and burping, crying and nappy changes, whining and fighting naps or lack of naps it might seem like a never ending cycle

but don't forget there is time for everything, there will come a time when you will feed your baby for the very last time. They will fall asleep on you after a long day and will be the last time you ever hold your sleeping child.

One day you will carry them on your hip then set them down and never pick them up that way again. You will scrub their hair in the bath one night and from that day on they will want to bath alone. They will hold your hand to cross the road then never reach out for it again, they will creep into your room at midnight for cuddles and it will be the last time you ever wake to this.

One afternoon you will sing the wheels on the bus and do all the actions then never sing them that song again, they will kiss you goodbye at the school gate the next day they will ask to walk to the gate alone. You will read a final bedtime story and wipe your last dirty face. They will run to you with arms raised for the very last time.

The thing is you won't even know its the last time until there are no more times, and even then it will take you a while to realise, so while you are living in these times, always remember there are only so many of them and when there gone, you will yearn for just one more day of them one last time.

                                                               Love and hugs

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