Happiness is a journey...

Hello world..

I have not been blogging for a while  now - but now i'm back :-)

 I have had a very difficult few months health wise and also personally. A while back in July I had the wonderful news that my thrombosis had now gone and I blogged about this being a fresh start for me -  http://wobblymum.blogspot.co.uk/2013/07/a-new-beginning.html
...all seemed positive. Then everything seemed to just fall apart, the neuropathy I have (Charcot Marie Tooth Disease) hit me with symptoms worst than I had ever had and I found myself falling almost daily and in pain constantly. As for my head, the news that the Sagittal Sinus thrombosis had gone was soon followed by the usual headaches, disturbed vision and horrendous 'whooshing' in my head. It seems a combination of scarring left by the SST and the IIH (Idiopathic Intercranial Hypertension) are still going to try and rule my life.

I found it difficult to cope with all the physical symptoms and was fighting the depression which was starting to take hold again. I try incredibly hard to be positive for my son - I don't want him to grow up looking back on a miserable mummy, I want better for him. He has his own problems, I passed on the Charcot Marie Tooth to him (it is genetic) and he has now also been diagnosed with Hypermobility Syndrome. So the past few months have also meant trips for Physiotherapy, Occupational Therapy and Orthotics for Sam. 

My consultant Neurologist and my G.P talk of my need for support.  My boyfriend and I parted two months ago. I have an amazing mum who unfortunately due to her health ( Charcot Marie Tooth disease also) is unable to help me physically..but she is there for me and understands. I also have a wonderful friend who was my Homestart volunteer when Sam was tiny.. she is there if I need to moan but sadly we leave quite far apart, as does my best friend. Most of my family (apart from my sister and her daughter) just don't understand, and I often hear negative comments filtering back to me through third parties, it hurts and it feels like being kicked when you are already down and struggling to find the way up. So..Sam and I tend to 'go it alone' a little team of two taking on the world.

I am now getting used to the sudden worsening of the CMT and realise that although the clot has gone I will still have to live with the IIH and other symptoms that the clot has left such as memory loss, and the sudden loss of words when talking ( so frustrating) However at the least the Stroke risk has now gone with the clot! I am focusing on Sam, he keeps me going as he is the centre of my universe - a wonderful son who loves me unconditionally.

Health wise I am finding that following a healthier diet is helping me and I decided a couple of weeks ago to join Weight Watchers. I had put on all the weight I lost after having Sam and this is not good for the CMT or the IIH so it was time to take action and go back to WW who I lost it with before. It took a lot to get me there, anyone who suffers from Depression knows how hard it can be to go and do something different..but my Consultants words about losing weight were ringing in my ears lol, so I did it and I am so glad I did because its a friendly group with a lovely leader. It has given me a little more control of my life..and now i'm obsessed with counting pro points, but hey..it takes my mind of other stuff!


                                             

 Here is to a happier journey.... xxx

A new beginning?

I'm back. Sorry for the absence of me wittering on, I have been in hospital for a week - followed by at home mostly lying down with a post Lumbar Puncture headache for another week. Such fun. Life is never dull here in sunny Sidmouth!

Good to be home, I missed my little man sooooo much when I was in hospital, and he has been incredible, so good, i'm very proud of him and love him all the world.

Well, I went into hospital with a headache..the mother of all headaches. This has happened occassionally with the Sagittal sinus thrombosis, but this time as I was having some rather worrying stroke like symptoms I thought it best to call the doc. I was obviously worried the clot had moved or grown - and I was in so much pain. He arranged for me to go straight in and there I stayed for a week and many blood tests, ecg's, scans a lumbar puncture and plenty of pain killers later I was finally set free - to come back to clinic to discuss results with my neurologist the following week.

Yesterday afternoon bubs and I set out to Exeter in the rare sweltering summer heat to try and find an even rarer parking space close to the Royal Devon and Exeter Hospital for my Neurology clinic appointment. Amazingly we find one and so still have plently of time to fit in three trips to the toilet and a drink ( such is life with a four year old!) My Consultant calls me in as we are coming out of the toilet for the fourth time and a comical handshaking routine with Sam ensues. I am thinking, 'this is all a bit surreal, what is going to happen next'? Well, what happens next is he tells me that my clot has gone, and I don't believe it so he shows me the scans.. it's gone. I get emotional, he wells up a bit too (bless him) 'It's very positive isn't Sara'? he says..

November 2006, Rushed into A&E at Gloucester Royal Hospital, the clot was found, Sagittal Sinus Thrombosis eventually diagnosed after consulting with Frenchay Bristol.I was discharged after two weeks with no advice on how to manage the condition,or the damage it had caused.. just told it would probably disperse in about six months. Now it's seven years later and I have had to learn along the way that it would cause constant headaches and has caused memory loss and affected my use of words , affected my vision, weakened my right side, and more..no doctor told me any of that in Gloucester, in the beginning.

I am thankful that from mid 2007 I have had a wonderful Neurologist at the Royal Devon and Exeter Hospital when I Moved back home to Devon.
I understand from him that I will always have headaches, I am on medication to try and manage this, I am also high risk for thrombosis so will have to remain on warfarin. The memory loss etc cannot be reversed ..so little man is stuck with his forgetful mum - but at least he has a new beginning with her now. No more ticking time bomb :-)

Stockings and heat...

Hello, sorry it's been a few days, however I am writing this lying on my bed, in The Royal Devon and Exeter hospital. It has been an interesting few days..well, that's one way to describe it!

As you know, I have an ongoing Sagittal Sinus Thrombosis, and this can cause problems from time to time. It carries a risk of stroke and other neurological complications.Last week my symptoms prompted my GP to send me straight to Hospital to be seen, and im still here. It is very hot in here, especially in my sexy support stockings, and i'm a bit fed up. I'm to have a Lumbar Puncture..so not looking forward to that!

Hey ho! 

Bedtime Battles and Custard..

My little man is going through a 'bedtime battle' stage ( at least I hope it's a stage) nearly 10 o'clock last night by the time he settled. Sam used to be so good at bedtime, from the time he started sleeping through 'til a few months ago - he was brilliant. People used to tell me how lucky I was.. and now he just won't settle on his own, and is very clingy too. It's becoming very tiring, and trying to stay calm is very trying! Perseverance...

We came downstairs this morning and bubs turns to me and says, 'Mum, can I have custard for breakfast?' hmmmm.

So, it's July then, nearly halfway through the year already. Scary. Sam starts School in September and I just can't believe where the years have gone, my little baby boy has grown up so fast. I intend to treasure every moment with him while I can, life is precious.

Still got weird vision and an ever increasing headache. I don't think being overtired helps, but what can I do? Unfortunately tiredness seems to affect both conditions badly - and stress. I see my Neurologist in a couple of weeks, I see him for both the Charcot Marie Tooth and The Sagittal Sinus Thrombosis, my memory has got so bad ( because of the Thrombosis) I am compiling a list of things I need to talk to him about. Hope he's ready for me!!

Right, that washing wont get itself on the line.... ;-)

New balls and welly boots...

So its The Championships, Wimbledon and Glastonbury Festival. Bring on the rain. I'm okay though, as I'm safely snuggled on the sofa watching Englands Laura Robson do her thing ( with the roof closed over centre court of course...)
Alas no strawberries and cream or champagne for me though :-(

I would love to go to Wimbledon, just a day ticket would be fine..soak up the atmosphere, sit on 'Henman Hill', but somehow I don't think it will ever happen. Glastonbury however, oh I have good memories of that ( ok, stop remembering, I feel old now...lol) I was very lucky the few years I went, it was hot and so NO MUD!! It would be great to go again, take little man - the Cbeebies gang are there this year in the childrens area, he would love that! They have a 'disabled' camping area I think and I'm sure I read once that a helper goes free. Children go free I know that. Maybe in the next couple of years..

Late night last night, tired legs and weird vision today. I can't do late nights anymore it seems to affect me for days, but also i'm not sleeping well right now, doesn't help. Hey ho :-) Early night tonight!

Sunshine and Butlins ..

Sam and Sprout

 

For those of you not familiar with Butlins, in the picture above is Sprout of 'The Skyline Gang' - with my little mini sprout.

 

Yesterday myself and Sam's Nana took him to Butlins for the day to cheer him and his Nana up as they have both been feeling a bit under the weather. So up at the crack of dawn (hang on, isn't that normal for Sam?) off to pick up Nana then the drive to Minehead. We never told Sam where we were going, I think he thought we were going to Marks and Spencers to do some shopping!

 

Once we we were on the edge of Taunton my little bright spark pipes up - 'mummy, I think I saw a sign to Minehead, is the car taking us to Butlins?' then he fell asleep, and I realised he was awake as we neared Minehead and from the back came 'Mummy! Nana! I can see Skyline!' Bless him.

 

Over six hours we were there, and it flew by, it was great to see Mum smiling too, she has full independence there, she hired a mobility scooter for the day  (mum has CMT like me and isn't very mobile now) and she enjoyed being able to look around the shops etc independently. I can no longer push her in a conventional wheelchair since I developed the blood clot (Sagittal Sinus Thrombosis) so it does make days out for us difficult.

 

I knew bubs would sleep on the way home as he was stumbling to the car ( wobbly sam and wobbly mum) with aching legs, but even so he still wanted to keep going - he has such spirit.

 

So, a success, and I was quite impressed with the price, I was expecting it to be expensive ( you know how it is with theme parks and the like - take out a mortgage to get in) it was £29 for the three of us. With so much to do - bargain.