Chronic Pain and the weather.

The leaves are falling, the air is crisp, the shops are stocking not only Halloween items but Christmas too! In someways Autumn is my favourite season, it’s exciting, it’s the lead up to Christmas and has fireworks too! I love watching the leaves fall and snuggling up in the warm with a cup of hot honey and lemon (my current favourite drink!).

Unfortunately, with the fun and exciting times Autumn brings comes the extra Hypermobility Syndrome pain. This is also the time I have to really start watching what i’m doing and pace myself. It’s so hard to explain to someone that doesn’t suffer from chronic pain just how bad things can get and how such the simplest of tasks (like walking from the car into the shops) can seem like the most daunting task for someone that suffers with joint pain.

The nature of Hypermobility is that you can have no problem doing a task one day and then you get a knock on effect which means you cannot physically move for up to weeks later, from one simple action! It’s quite isolating to be honest and can make you feel very down.

With a 2 and a half year old things get harder, he is so active, he’s a whirlwind of fun and energy and it’s going to be a challenge keeping him entertained through the months where I struggle to go out, luckily I have a new Homestart volunteer coming to us as of Friday so that will help a bit.

Today I walked to the park with my friend ( thank goodness for my Stokke Xplory as I may have had a problem!) I was able to push Rocket with relative ease and he had a fabulous time as the park, although my friend had to take over and chase him as I coul’dnt do it, signs things are slowing down again. I’m proud of myself that I managed to walk but as I write this I am in a lot of pain and can’t leave the sofa.. what do you do when your’e up to the maximum dose of prescribed painkillers and you are still in a lot of pain? how do you ease it?

If anyone needs me i’l be wrapped up in my electric blanket, enjoying the autumn from my window.

How do you cope with chronic pain and a demanding toddler?

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Kiddy – Guardian Pro 2 – Review

Because of my Hyper-mobility Syndrome, I suffer with certain areas of childcare like taking Rocket out alone in the car, he is an incredibly strong little boy and getting him into his car seat with a 5 point harness was causing a lot of pain and tears for both me and him. I was at the point where I had resigned myself to the fact I’d have to stay indoors unless accompanied for help with Rocket and that idea made me sad.

When Kiddy sent us their new Kiddy Guardian Pro 2 car seat, I was fascinated with the design. The Pro 2 will grow with your child from the age of 9 months to 12 years and instead of the usual straps it has the original Kiddy Impact Shield which is like a bolster that goes over the child’s legs and chests holding them in.

When I first put Rocket in it I was expecting a struggle to get the Impact Shield in place whilst I plugged the belt in but he was fantastic and I think it makes him feel more grown up as he will happily climb in to his seat and lift his arms up whilst I put the Impact Shield in place. He sees it as his little ‘table’ and rests his arms on it, he has much more freedom to move his arms and shoulders whilst I am happy knowing he is so much more secure in the seat.

When it comes to plugging in the belt and securing the Impact Shield it couldn’t be easier for me, I suffer with problems in all my joints from my Hypermobility Syndrome and I still find this easy as although you still need to lean over to feed the belt round and plug in, it takes the pressure off of struggling with the child and fighting to get the buckle in. Rocket has been such an angel in the car since we got this seat, not just getting in and out but also the journeys seem so much more pleasant and I put that down to the comfort of the seat.

– The Kiddy Guardian Pro 2 is extremely lightweight! I have no problems lifting in in and out of the car sometimes I have bad days when I am unable to drive. Before, I would have to stay home as I couldn’t move his old car seat into other peoples cars as it was secured and fiddly but with the Pro 2 you simply put it in place and its held in by the car seat belt so I was able to go out with my mother in law with ease and peace of mind that Rocket was safe and happy. You can also take the seat on airplanes!

I love the fact the seat is totally adjustable and grows with your child, it also has a booster cushion and the material is breathable and comfy for little people. One of the other big comfort pluses is it holds Rockets head comfortably. In his last seat it was so open that if he fell asleep he would fall to the side meaning if we did have an accident it could have caused serious neck or head injury but the Guardian Pro 2 cushions support his little head in place keeping his neck and spine safe.

The Kiddy Guardian Pro 2 does recline allowing your child to have total comfort during long drives, that’s the only thing we haven’t been able to do as we have a teeny car but the action is simple.

All in all this is hands down (and hand on heart) the best car seat I have ever seen, it’s beautiful to look at, comfortable, safe, durable and long lasting and best of all, it has given me confidence and strength to take Rocket out alone again! If you do suffer from neck or back pin or a similar condition to mine then its definitely worth spending the pennies to have such peace of mind and freedom.

Safety Features :

Original Kiddy Impact Shield, Optimised Geometric design of the lateral areas, New Kiddy Shock Absorber, High- Tech Material.

Comfort Features :

One-Hand Height and width adjustment, integrated diagonal seat-belt guide, foldable and removable insert cushion, snooze position, 3 stage leg extension, Breathable Thermotex fabric, durable cover, use in Aircraft.

Find out more about Kiddy HERE . Kiddy are also on FACEBOOK and TWITTER.

We received the Kiddy Guardian Pro 2 free for purposes of review, all opinions and words are our own.

 

A consultants visit.

I’ve finally been able to sit and write, I’ve got so many posts I need to do which I will catch up on next week but I wanted to write down what happened with my consultants appointment on Thursday first.

I had been waiting months to see my consultant, especially as the pain has been so much worse and now with my arms and hands going numb I was so worried that something sinister was going on. I usually take Rocket with me to my appointments as I have no childcare but seeing as this was such an important appointment for me to explain what’s going on, Aaron kindly swapped his day off so he could take care of the little monkey.

So basically I told her what was going on and how everything had been hurting so bad and alot worse than they had ever been, it all flooded out, so much so that I tripped up what I was saying and my words jumped around as I was trying not to forget anything ( I usually come away and think ‘crap, I should have mentioned that’)

Summing up the appointment, she thinks I have Fibromyalgia, brought on by my Hypermobility Syndrome but to diagnose it officially they need to rule out other problems that could be potentially causing the symptoms I have, so she has scheduled an MRI scan on my neck to see what’s causing the numbness and tingling in my hands and arms.

She also prescribed a new drug, which I’d never heard of before that they use to treat epileptics. It’s called Pregabalin or in America, Lyrica. The way it works is by blocking some of the nerves that cause pain ( calms them down ). I’ve only been taking them a day but I seem to have some horrid side effects so far as my legs and calf muscles are twitching like no ones buisness! I’ve also been feeling like my face is sunburnt and my skin feels fluey. I rang te doctor and she said to take one a day instead of two for a few days til my body gets used to them but after 6 weeks il be taking up to 6 of these tablets a day alongside my cocodamol and tramadol.

Last night and all of today I have spent in bed not able to move as my back has been so unstable, it clicks everytime I move causing incredible soreness and the only thing other than the pain meds that seems to help is heated beanbags which I’ve got constantly behind my back at the moment.

So all in all not a good week, but I am looking forward to the warmer weather as one of my triggers is the cold so spring should bring some relief at least!

Dwelling on the past is never good.

I can’t help but wonder if some of the choices i’ve made over the years have maybe been the wrong ones.

Don’t get me wrong, I love my husband and I have a gorgeous and healthy son who I absolutely adore, but going back to 2007 and I was able to do alot more than I am now, I was healthy and active and until I hurt my shoulder I was blissfully unaware of the HMS and the problems it was about to cause.

I seem to be constantly battling with myself recently with thoughts of how I could have done it differently, if i’d tried harder to keep fit once I was signed off and not sunk into a depression and let the pain overcome me. What if i’d never lifted that wheelchair onto the London Eye and caused the injury which led to my diagnosis, would I be in the state I am now? These are all things that go round and round in my head and it needs to stop. I know its unproductive and it’s not good to dwell on the past as I can’t change what has happened but its also changed my job prospects and when it comes down to it, it’s changed ME.

I was very scatty with what I wanted to do long term, one minute i’d want to be a midwife, the next an actress but back then I could have been either I guess. Now I struggling with even getting out of the house and taking Rocket shopping alone ends up with me exhausted and either in tears or so wound up it’s unreal. I am crap at pacing myself and apparently crap with accepting how things are nowadays and as hard as I try, I can’t seem to move past the fact that just a few short years ago I could have climbed a mountain (maybe not an actual mountain, maybe a medium sized hill.)

After nagging my Pain Consultant, she has agreed to refer me to an occupational therapist in the hope that I can discover what jobs I CAN do… If I could live of blogging and being online I would do that but I can’t see that happening.  I also can’t sit in my house for the rest of my life high on codeine, somethings got to change.

Iv’e set myself some small goals for this year to get me out and about and the biggest (and most scary) being Cybher which I am really looking forward too but also praying I can keep up with everyone else! I need to keep remembering to do things that make me happy, that way I can forget my pain.

 

Living with Chronic Pain.

I try to not write much when I am in pain as it can come across rather whiny and i’m sure people don’t want to constantly be reading about which body part is causing me the most pain each week but it is also important that I am open with how I really am on my blog, especially as this blog is about my struggles with HMS.

This week my pain has gone through my normal pain threshold and my back has become very unstable, along with my wrists which feel like someone is intermittently hitting them with hammers. This has made it very difficult to do a lot of things. I was lucky enough to get the majority of errands done yesterday with Aaron being off work but there is no way I could take Rocket out alone without help at the moment. I couldn’t even go out alone without knowing someone was there to help me if i needed. That’s how bad this week is.

Iv’e also been suffering from panic attacks, at least that is what I think they are? I get very shallow breathing and feel like I cant get enough oxygen into my body and it can be very frightening.

I have a friend (@geekisnewchic) who I value a lot who is very inspirational as she has been through a lot to cope with her pain and she is helping me have the courage to fight my pain on the path to accepting who I am and how to deal with life as it presents itself. Its a journey I am just beginning and it terrifies the hell out of me. Pain that is constant gets you so down, it invades your thoughts and tears away strips of your being until all you are is a shell of your former fun loving self which leads to feelings of guilt as you arn’t the wife or mother you long to be, you should be. That is how I feel.

I tried to get an appointment with my pain specialist but she is fully bookend until March! which is actually when my next appointment is anyway. So I called the doctor again this morning, I called yesterday about the same issue but today this doctor (a different one) was more understanding and has upped my muscle relaxants on top of my co codamol and a doctor is scheduled to call on Friday for a medication review and to see if I need to increase it even further. The only problem is they have the side effects of knocking me out and with a 2 year old that’s not always an option, so I am just hoping my body gets used to them enough to give me pain relief without the absolute need to sleep.

At the moment i’m on a codeine high which is a relief as along with the tizanidine it makes me feel ‘loved up’. I guess that’s the euphoric feeling of the opiates. A Lot better than curling in a ball feeling angry at the world in pain.

I guess the biggest thing I need to come to terms with is the fact that I will be on medication for the rest of my life. That is an upsetting thought but not something I can change.

I really wish there was a way I could get a grant or funding for the Gastric Bypass operation, after being turned down by the trust twice. Having a surgeon tell you it’s riskier not to do the operation than to do it really sticks in your head. I guess I can just keep applying.

A Legend with limits

A Legend with limits…

That’s how my husband described me last night as I was laying in bed in
too much pain to move.

I’d done it again, done too much and once again was being forcibly
reminded that I can’t do the things I want/need to and not half the
things I used to be able to do.

Yesterday was a fantastic day for me, with my weightloss so far I seemed
to have more energy and an incredible urge to get things done, so I set
out to do those things.

I blitzed our bedroom, throwing away, sorting out, I did laundry (3
loads) hoovered, took Rocket to the park BY MYSELF (this never
happens…) And to top it off I bathed him on my own as his daddy was at
the cinema.

I felt incredibly proud of my efforts, which to others is just a normal
day and nothing special, but to me that was the most I’d been able to do
in months. That was until about 9pm when I could no longer move and had
pain invading my whole body.

So now, the day after my fantastic day, I’m sitting here, unable to move
far, feeling like I’ve run a marathon/gone 10 rounds in a boxing
ring/climbed Everest (take your pick).

I’ve had lengthy conversations with my consultant about my limits, just
one example – hanging washing out for someone without chronic pain is a
breeze, for me it’s a challenge. I know I’m not the only one who has to
deal with this but sometimes it feels like it.

How do you learn to slow down?! I have a household to run, 2 boys (one
big one small) to look after and I’m racked with guilt that I can’t do
the things that I SHOULD be able to do, we married for better or worse
but he is definitely getting the pointy end of the stick.

If anyone with chronic pain or HMS knows how to ‘pace themselves’ then
please let me in on the secret as I can’t seem to slow myself down
(until I get a nasty reminder)

But I suppose I’ll have to learn, to my boys I am a legend…

But a legend with limits.

Pain and Emotions

I was unsure whether to blog my feelings but if I can’t be honest with how I feel then what’s the point.

Last night I cried myself to sleep, along with getting that horrendous pain in my chest, you know the one that makes you feel like your heart is breaking. All because I had worked myself up about my HMS.

After 3 years of living with chronic pain and not being able to do everything I used to be able to you would have thought I’d come to terms with it… 3 years is a long time. But no, I still torture myself about it.

Next week il be going to Thorpe Park and whereas I can go on rides to a certain point, I know that come a few hours in il be struggling with standing in the queues and I get very tired so quick. I hate that I can’t simply enjoy being out with friends the way I used to be.

The winter is the worst, I can hardly move when I get a flare up and I tend to have quite a few that can last up to 2 weeks each.

I know I shouldn’t feel sorry for myself, I have good friends who suffer with the same and I know we have to get on with it, but it still doesn’t stop the feelings and the tears and fear that I cannot do what I used to do, I’m not that old although I feel about 60 some days.

Sorry to go on, I’m just having a low day and needed to get it out. Il be ok tomorrow.