lucky enough to be in the situation I am in!

I know that I have been terrible at writing to you all and I am so sorry about that, I know I always apologise and then don’t write again but the last few weeks have been tough for me.  This is changing though and I am coming back to update you on this roller-coaster ride that has become my life.  I have had the first infusion of Tysabri and it has helped, I am not sure entirely how much is the meds and how much is the hope but whatever it is I am feeling better.  The infusion was ok as well, it wasn’t half as bad as I thought it would be, and I got to meet some nice people as well.

The last few weeks it has been hard to type as my right eye has been so painful and using the computer has been sore, so I have taken a break to try and let it get better and it worked.  I think I was also a little down about taking the new medication, I felt like I was selling out, giving up, turning down a one way street but I have decided to get on with it and try and only see the positives of the decision I made.  I was so adamant that I wanted to do this on my own, stay away from Pharmaceutical  companies and their poisons but it turns out, I am not that brave.  I needed something to help slow this disease and the only people who have it are the evil ones, the ones that dictate more to us in than I think we ever realise.  I don’t want to be disabled any more than I am and I still have so much living I want to do, so the compromise has been to seek medical help.

I have no problem with researchers, I have no problem with scientists, I have no problem with consultants, doctors or nurses or any other group involved in this procedure, what I have a problem with is the Pharmaceutical companies charging so much money that they hold the NHS to ransom.  They choose if we live or die and each of us has a price ticket on our heads, I feel strongly about this because so many people are ill in the world and most are not as lucky as me.  I had the choice to take these drugs and I had the choice to not, most have no choice at all and that makes me sad inside.  I have been through hell in the last year and I honestly had times when I didn’t think I would make it out alive, it just seemed to hard but now I feel a little better so fingers crossed when I am well I can do something to rid myself of guilt I have for being lucky enough to be in the situation I am.  Charity work has always been important to me but I think I might have to think up something big to do. 

Love for now

Jess xxx

Whitney Houston- one moment in time lyrics

Update finally!

I thought it was about time for another post, sorry this is a little painful and I am not writing very much, just been having a tough time with the eye and everything so I have been staying away from the computer.  I thought I would kick off this post with my current symptoms and then you can maybe understand why I haven't been posting much lately (which I am sorry about).

Symptoms -
Stiffness - really uncomfortable from the minute I waken until I go to sleep.
Spasms - leg and spine spasms
Optic Neuritis - in right eye, very painful
Muffled Hearing - in both ears but more so the right
Drop Foot - Left leg really hard to lift and walking is getting harder and more painful
Lhermitte Sign - electric shocks down neck & spine
Uhthoff Sign - sensitivity to heat.
Every so often I notice my head and hands shakey uncontrollably (which is a little scary)
Bladder problems continue

I have my first Tysabri infusion tomorrow fingers crossed.  I will write tomorrow and let you know how it goes, for now though I am going to go to be and rest.

Loves
Jess

Sore Eye

I know I haven't been good at this lately, my right has been bothering me so I will be back properly soon I promise xxx

Blackmore's Night - Believe In Me

I will always survive!

I am upset with the world today and I feel bad about it.  This week has been a strange mix of other peoples problems and I have found it unusually upsetting and here is why.  Healthy able bodied people who have everything in life seem to be determined to make their world harder, against all advice and judgement they seem eager to throw themselves down a path of emotional turbulence and then look for comfort and reassurance.  I know I have been guilty of this time and time again but now I am where I am in life it hurts to see and it hurts to know that where all these people can walk away from their problems, they have solutions to their problems and through a little pain in their lives they will walk away from the current bad patch and it will be a distant memory.

One reason I feel so sad about this is somebody said to me that someone was in a dark place and it would be  an up hill struggle for them forever and this meant that it was ok for them to walk away from their problems and start again somewhere new, away from it all.  I know that this is not fair and every persons problems are different but it makes me sad because I have been in the darkness for so long, my whole life will be an uphill struggle and there is only one way I can escape it, and that is not fair on everyone else.  It makes me sad that people cause this emotional turmoil for themselves and then get to leave it behind them whilst everyone around them endures the anguish of their situation until they mak this decision to change their situation.

There has been another example of where this is relevant and the person concerned seems unwilling to deal with the problem that they are having, causing worry and stress for everyone who comes into contact with them.  When people try to help them they lash out and really hurt those close to them.  I know that this is a horrible situation to find themselves in but I remember back in a life long ago where I was the victim of abuse by a partner that I had grown so attached to that the daily mental and physical abuse was accepted and my world closed in around me.  A life where everyday was a nightmare and to make it all worse I was sick with what we now know was Multiple Sclerosis.  It was an uphill struggle to put this time behind me and to some extent I never really achieved this but I survived and with the help of those who cared for me and loved me I got through it.  It makes me sad that the person who is dealing with this problem is pushing so hard at those who love them that they are hurting people, therefore are filling the role they are trying to escape.

Every persons problems are different and I understand this, everyone has to follow their own path but it hurts me to know that people justify running away from their problems when all it takes is a little discomfort and will power to fix them.  It makes me sad that my problem is not going away through determination, will power even love and support.  The problem I have is a disease that will ravage through my body and nothing can make it stop, slow yes, but stop no.  I know that this is no ones problem but mine and judging other peoples problems is not fair but I guess that my point is life is not fair.

I am desperately trying to pull myself up out of the darkness I have found myself in and although I will always have time for other people and their problems but I think through my experience my advice has changed.  I can't sit and tell people it is ok to run away from their problems because it is the easier option for them because we make our reality, the pain that we bring on ourselves should be dealt with head on as I believe that it is the only way we will learn the importance of making better decisions next time.  I believe in repeating things that are put in front of us until will make the right choices.  I hope I make the right choices from now on and although I can run from or fix my problems I want to take life on full force and whatever life throws at me, I will always survive!

Signing out for now peeps
Jess xxx

Ranty McRant strikes again

I have to admit people that my love affair of my Blog has recently been shaken and that is another reason why I am finding hard to write.  I feel I always write and tell you all how horrible my world is and how miserable I am and I don't like that.  I have been spurred back into action by the state of our country, due to my illness I am spending some quiet time at home and all I am hearing is 'Riot' this and 'Riots' that.  I honestly can't believe we are even speaking about this problem, it is rubbish that these idiots are allowed such coverage.  I honestly think that we should round them all up onto a boat and send them off to find another society they actually wish to be a part of.  I have no problem with the way they wish to behave, I just do not think it is fair that I should have to struggle with my existence and have to pay taxes to support these people.

I know that this has turned into a rant about these idiots but I am sick of hearing about it, I can't believe anyone would be so mind numbingly stupid to wreck their own areas, surely amongst there obviously damaged brain cells they could have worked out the 'don't sh1t on your own door step' rule.  I wonder how these people have got to the be the age they have with obviously such low intelligence.  I know that some people will be thinking I am out of order but to be brutally honest I don't care because these people who did this are well, they are able to walk, don't waken every day in huge amounts of pain and the only thing that is holding them back is them and the small mindedness.

It makes me really upset the amount of people who have their health and are wasting it.  I wish I was well and I would give up anything to have a normal pain free life but unfortunately I can't and this is my cross to bare.  I would give anything to anyone in need and I honestly wish that these people could have had a better start but it is the politicians that have let them down repeatedly over decades and if they are angry they should attack them where it hurts, not us.  I would support a movement that challenged government and their small mindedness in regards to real people, but trashing our areas is not cool and did nothing but make honest working people like us despise them, this has worsened their situation because the voice they once had has been muted by their behaviour.

Apologies if this offends you, and don't be shy to leave a comment, sometimes feed back and other points of view are helpful and will make my understanding better.  I am grumpy and foul at the moment so this is a little harsh I know, but it made me write again.

Grumpy Girl signing off.
Love to all
Jess

Pain

Wow I hurt, it's 00:20 and I am in pain tonight, my skull feels like its crushing over my eyes. It is tough when I hurt so much, it hurts when I breathe in and out, I'm getting shocks and my body keeps spasming. Just thought I would tell you all, tonight is really hard. Loves jess

I'm Back

I haven't written lately because I have been away with my family so apologies for the silence, it wasn't intentional at all.  We had our annual family Golf Tournament on Sunday which involves all the men going off to play and then we all meet up in the evening and there is a little award ceremony where trophies are handed out, food, drink and a chance for all the Aunts, Uncles, Cousins, Second Cousins, family friends and the list goes on to meet up and enjoy each others company.  Everyone (Mum, Dad, Brothers, Sister-in-laws, niece and nephew) then drove down to Cornwall to see my other Nanna and Uncle.  It was a hectic few days and I was absolutely exhausted, unfortunately I wasn't sleeping well so it was tough to keep level.

I have been slipping over the past few weeks and it has been terrifying me, firstly I have been suffering with Optic-Neuritis, I have had problems with my ears, my hearing phasing in and out.  I went to the doctors last week and she looked into my ears and said they were swollen inside and also had an infection but I believe this has been caused by me prodding them and trying to fix the issue I have been having.  I am worried that the problem I have is not an ear infection, the infection has been caused by me and my hearing problems have been caused by MonSter.  It isn't a common symptom but after researching on-line it does sound like it is a possibility, so this has been another source of stress for me, I won't know until the 24th of August when I go for a brain scan.

Everything has been getting on top of me lately, I feel that I am getting a handle on it again, emotionally.  I find it hard to cope when lots of things go wrong.  I also find it hard to concentrating when all these things are going wrong.  I think you have all figured out by now that it is the emotional and mental side of all of this that I am struggling with the most at the moment.  I find it tough that life doesn't stop just because your sick and whilst dealing with the everyday problems that come with Multiple Sclerosis you have to deal with everything else in your life as well.  It amazes me that people in perfect health sometimes can't cope with life, and people in a much worse situation than me manage to cope so well, makes me feel even more lost than ever.

Right must go wash and clean my bathrooms x
Loves
Jess

Harry Boy

I promised you I  would be back so here I am folks, I know that you must think I am completely mental but I promise you that I am trying hard not to be.  I am going away this weekend with my family, my brothers families and our family friend are all at my Mums and on Sunday it is the Harry Boy which is a family golf tournament.  Grampy, Uncles, Cousins, 2nd Cousins, Great Uncles,  Family friends all meet up and play a tournament.  The women usually meet up and have lunch, recent years have been a little different as the older generations are all getting a little old for everyone to be together, so the young ones usually head off and head off and go shopping (think thats what girls are meant to like).  It is a brilliant day and I this year is going to be even better because The Man will be there.

Bed time now though I will keep you all updated xxxx
Night night xxx

Reality check

Sorry I have been a little slack lately at writing but I have been going through a bit of a crisis lately about all of this stuff and also the usefulness of my blog.  I know that it might sound silly but recently I haven't felt as if I can tell the honest truth, the truth that makes this blog real because it has been bad, it has been upsetting and it has been completely out of character.  I have in the last few weeks had thoughts of ending out (checking out as I have put it), I have had thoughts of such horror that it has made me so upset I have felt like I have completely lost myself to the MonSter.  I will reassure you and tell you that I am ok and I would never, ever do anything to hurt myself because I have a family I love, friends that I love, The Man who is absolutely amazing and I love with all my heart, but most of all my niece and nephews who are my world.  I could never do anything to hurt any of them so although these dark thoughts have been in my head, they would never be a reality, that I will promise (even pinky promise).

I hit an ultimate low on Wednesday, the health worker came out to the house to assess my needs.  She was lovely and she brought a junior psychologist with her who was also very nice but I think it was a massive reality check about what is happening.  Unfortunately it was one (if not the) of the hottest days of the year which meant I found it difficult walking around the house (had to use my stick Dotty) and I couldn't lift my foot when she asked which was sad as I practice that all the time, because I am desperate to be accepted onto FES (http://www.salisburyfes.com/ ) and one of the requirements is to be able to lift your own foot without aid.  I think it was also another hoop I had to pass through for someone to help me and I know this is awful to say but it highlights that all the help in the world is not going to make MonSter (MS) go away.  It makes me sad that this is happening to me, this is something that happens to someone else, someone your parents know and you hear about them every so often, but not to me.  I see other people with MS and I still look at them and talk to them and there is a piece of me that thinks 'Poor person, I am glad that it isn't me going through all of that' and then it hits me, that it is happening to me and that I am like them, I am going through it and there is nothing I can do to change it.

One good thing that has come out of the visit is I explained to them how I had been feeling and they are going to refer me to the psychology department for counseling, I was honest about my darkest thoughts and uncontrollable anxiety and also about not being able to convince myself that all these things are real, after 10 years of thinking I was crazy and sick in the head, attention seeking or a liar it has been really difficult to try and make myself believe that all these symptoms are real and that there is something wrong with me that I have to aim my attention and sort out.  I have a problem in my life like the other 7 Billion people on this planet and no one can make it better, no one but me.  I think that the rational side of me knows this and really wants to accept it but the other side of me is scared and in such denial that I can't seem to get past it.

The other thing that I have wanted to write about was something that happened last weekend, that really hurt me.  When I first moved from Scotland I made a friend who was a good friend, a close friend and someone that made the transition from Scotland to England easier.  We used to laugh, drink, fight, it was like being in a relationship without the complicated bit.  My partner at the time found our friendship difficult to cope with, his girlfriend at the time disliked me intensely but we survived it and when the partners in our lives because memories we continued in our world, we were the little bit of comfort to each other that only friends can be.  The thing about our friendship has always been the complication of everyone thinking we were more than friends, and 2 and half years ago when he started a new relationship this proved far to difficult for him to juggle so we drifted apart.  The odd phone call here and there but nothing like it had been, it was also made harder because I moved to London, I was back on my feet and ready for another chapter in my life, another chapter that I alway believed he would be a part of, in what ever small way that could be.

The Man and I had arranged to meet them for a meal, my friend and his girlfriend and at the last minute they changed the plans and it didn't suit us the new arrangement, there were strangers, take-away and a child involved so we asked to rearrange for another time.  They suggest coffee that afternoon which suited us all it seemed, until we got there.   When we got there it was obvious that this was a women who had already made her mind up about me and made it clear through out the 2 hour period we spent with them that she did not like me.  In the end I sat there watching The Man, my friend and this women deep in conversation and I couldn't have felt smaller or more unwelcome.  I sat praying that we would all say our goodbyes and the whole thing would be over.  I hadn't received a hello when we got there from this women and I definitely didn't get a goodbye, but by that time I wanted to get away from it all and to be honest I wanted to cry.  The friend that I had always know was gone, locked into this new relationship and once they are married in September I am sure he will be gone from my life forever.  It made me sad, it made me feel sad for so many different reasons but mostly that this women obviously hated me for reason unknown, she was taking my friend away from me and I couldn't honestly say hand on heart I believed that he was happy.  I know that this isn't anything to do with the grand scheme of things but it made me realise I can't push pause on the rest of my life when I deal with the MonSter and I am not emotionally strong enough to see this situation for what it is.  The scared little girl in me things that my friend turned his back on me because I am sick and although I know that isn't what happened, thats what it felt like.  I am no longer a valid person in the world, I am just broken.

Life makes me sad at the moment and it is hard to rationalise things and make them make sense.  Nothing in my life right now makes sense, I don't have a clue what will happen to me, I don't know if I will live out my days in pain and discomfort, counting the minutes until I go to sleep and don't waken up.  It has been

• 11 months and 17 days.

•  8,424 hours.

• 505,440 minutes.

• 30,326,400 seconds.

roughly since my diagnosis, will I care about time since in the future or will I learn to move on and not think about that day, the day a very nice man told me I had Multiple Sclerosis and changed my world forever.

Anyway I have washing to hang out ready for my adventure at the weekend.  I will be back later to tell you about it, I am ok and like I said I will deal with these emotions but today I wanted to show you all how tough this is, how hard I am finding it.  Sorry, but if I can't tell you these things then my Blog isn't helping me, it is just a show of half truths and I will not allow it to become that.

Loves for now
Jess xxx

Quick...tomorrow I promise

I have a health visitor coming around tomorrow to see if there are any modifications I can make to the flat to make life more manageable, they are also the door to the physio and the counsellor so fingers crossed it all goes well.  I think that I will feel better once this step is done and dusted, it is a step in the right direction anyway.  We also have to go up to the old house to see our house mates so I might not get the chance to write again today but I promise I will write to you all tomorrow in more depth.

Loves

Jess

Digesting science part 2

I haven’t forgotten to tell you about Digesting Science but there is so much to tell you I am not sure I can say it all correctly, but I will try.  It was a week ago now and we met some amazing people, there were researchers and Consultants there and I can honestly say it was the most helpful thing I have done since being diagnosed, by that I mean you can drive yourself Crazy reading loads of stuff but it is sometimes dangerous because you can get in a right pickle about it all.  The other night was great because it was a room full of people who had near enough dedicated their working lives to the finding the cause of MS and trying to stop it.

We met  -

A man – Who studies nerves and he told us that they do not know what kills nerves, so they understand what MS does and how it does it but they don’t know why exposed nerves die.  Also there are proteins that can conduct messages through the damaged nerve so no all nerves die.  It was fascinating.

Two girls – who were doing studies on mice to find treatments for Optic – Neuritis, they were good because they were telling us that they were testing other medications that are already licensed and seeing if they could find something that would fit their cause.

Then we spoke to a Scientist that was looking into Interferon which is another MS medication that isn’t really effective because the body can become immune to it so he was studying why your body reacts in this way to it and seeing if they can improve this medication.  Along with this man we spoke to a Specialist (Consultant) who did half of his work in a clinic dealing with people like me and the other half studying MRI scans and trying to improve them, as not all white marks on a scan are plaques, some are just a build up of liquid which can disappear.  He told me of an MS tissue bank where they take samples from dead MS patients and study them, so I applied to be a donor for this, it means when I die they will take me brain and spinal cord (but will leave me pretty for an open casket).  He was amazingly interesting and The Man spoke to him for ages, I think he found this guy most interesting.  I actually asked him about ‘coming to terms with MS’ and what this meant,  I thought that as he see loads of people he might be able to tell me, or at least hint to what it meant, he couldn’t and didn’t and said not to listen to anyone who talks about coming to terms with it, that I am the only person can decided if that is possible and he suspects that due to the nature of MS that it isn’t. 

We then spoke to another Scientist who has been working with MS his whole career and has been involved in Medications such as Tysabri and is now looking to improve on this and take the scary danger of PML away from it and also adding some other bits on, making it more effective.  He did tell me something very interesting and that was that they now know how to slow the progression of Relapses down, now they are looking to actually work on the actual disease and try and aid the body in repairing itself.  It was very positive and exciting what he said.

It was a great night, talking to people in the know over a glass of wine.  I think that The Man could tell you all about it better than me so I will try and give him a nudge. 

Now we know why I wasn't diagnosed earlier....

When the NHS and Glasgow get together you can expect interesting results. Here they are!!!  These are sentences exactly as typed by medical secretaries in NHS (National Health Service) Greater Glasgow 1. The patient has no previous history of suicide. 2. Patient has left her white blood cells at another hospital. 3. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days. 4. She has no rigors or shaking chills, but her husband states she was very hot in bed last night. 5. Patient has chest pain if she lies on her left side for over a year. 6. On the second day the knee was better and on the third day it disappeared. 7. The patient is tearful and crying constantly. She also appears to be depressed. 8. The patient has been depressed since she began seeing me in 1993. 9. Discharge status: Alive, but without my permission. 10. Healthy appearing decrepit 69-year old male, mentally alert, but forgetful. 11. Patient had waffles for breakfast and anorexia for lunch. 12. She is numb from her toes down. 13. While in ER, she was examined, x-rated and sent home. 14. The skin was moist and dry. 15. Occasional, constant infrequent headaches. 16. Patient was alert and unresponsive. 17. Rectal examination revealed a normal size thyroid. 18. She stated that she had been constipated for most of her life until she got a divorce. 19. I saw your patient today, who is still under our care for physical therapy. 20. Both breasts are equal and reactive to light and accommodation. 21. Examination of genitalia reveals that he is circus sized. 22. The lab test indicated abnormal lover function. 23. Skin: somewhat pale, but present. 24. The pelvic exam will be done later on the floor. 25. Large brown stool ambulating in the hall. 26. Patient has two teenage children, but no other abnormalities. 27. When she fainted, her eyes rolled around the room. 28. The patient was in his usual state of good health until his airplane ran out of fuel and crashed. 29. Between you and me, we ought to be able to get this lady pregnant. 30. She slipped on the ice and apparently her legs went in separate directions in early December. 31. Patient was seen in consultation by Dr. Smith, who felt we should sit on the abdomen and I agree. 32. The patient was to have a bowel resection.  However, he took a job as a stock broker instead. 33. By the time he was admitted, his rapid heart had stopped, and he was feeling better. Don't ever go to Glasgow !