Building the walls

I haven’t been feeling myself. I’m not enjoying life. I’m crying for no reason. I can just be sitting on the sofa, looking at the TV and I’ll realise I have tears running down my face.

I’ve had periods of depression before, usually triggered by something, normally an event. There has been no trigger this time. I’m not even sure if I AM depressed.

So I decided to see the GP. I had a little speech ready in my head and kept running through it while I sat in the waiting room. The GP called me in and I smiled and said hello as usual. I like my GP. He tends to listen quite well and often asks me what I think in relation to my T1 Diabetes and MS. So I sat down, took a deep breath and launched into my speech.

Nothing came out. I stalled and stumbled, only being able to croak out the odd word here and there. I managed to get the sentence “I’m worried I’m getting depressed” out and the GP took over. He asked me questions that just needed me to answer with a nod or a shake of the head. He said he felt that I needed some support and has referred me to the clinical psychologist at the local hospital. This is different to the normal counselling that gets offered as these people specialise in mental health for those living with long term medical conditions.

So now I am waiting for an appointment. In the meantime I’m doing what I can to shift my focus and to think about how I feel. Distraction therapy helps, hence the need to write and to blog. I’m finding aromatherapy candles burning help me too. Sometimes I just watch the flame and ‘zone out’. Thinking about how I’m feeling isn’t easy. What I have realised is that I’ve put up walls around my feelings. I start to feel a bit out of sorts and the walls go up quicker than you can say “Trump” and “Mexico”. The problem with walls is that you can’t get through them very easily. So although you know you need to ‘reach out’ for help, you just keep hitting a solid object like happened with the GP. I need somebody to climb over the wall to try and reach me. To let me know it’s OK to live within the walls while I wait for someone to teach me how to break those walls back down again. There is a great twitter thread doing the rounds at the moment by Thal (@thalestral) talking about the need for people to reach in as well as for those who need help to reach out.

The last thing I wanted to say is that it takes a lot for some people to make that first admission that something is wrong. I know I tweet about my journey and I write this blog and part of that is so that others don’t feel that they are on their own, but it’s also a form of therapy for me. If someone reaches out to you, please take it seriously as it has taken that person a lot of courage to say something. Don’t belittle them by saying “sorry you’re a bit down”. Speaking from experience, that is an awful thing to hear.
But despite my little tale of woe, I am still Jules. I am still laughing, I am still here for anyone that wants help or wants to talk, I am still trying to go out and meet new people (see @MidlandsMeets).

Lots of love and hugs to all those who have scaled those walls to connect with me. You know who you are xxx

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My Journey to a Diagnosis

I’ve always been a bit clumsy.  Tripping over my own feet, dropping mugs and glasses (obviously the wine glasses were always empty), bumping into things etc.  That’s just who I was.  Things changed in December 2009 though, when more concerning things started to happen.

I got married in September 2009.  I was just starting out with my new husband, Lee, and my son, Dominic, from my previous marriage.  At the time we were in temporary accommodation.  In November we were offered a permanent house which we moved into and life was good.  While at work, I started to feel unwell. The side of my face started to feel tingly and my eyes weren’t focussing properly. My boss was married to a GP and he gave her a call.  He was trying to be discreet but I heard him, say “yes, she’s slurring too”.  His wife advised I get an emergency appointment with my GP asap. He took me to my appointment where the GP advised that I had a migraine so I got a lift home and went to bed.  Over the following days, things went back to normal and I thought nothing of it.

On December 30th 2009, I woke up to find that the left side of my face had dropped.  My eye was droopy and my smile was slightly lopsided.  The whole left side of my face had pins and needles as did my left forearm and hand.  BUT, all the wrinkles on the left side of my face had gone!! I looked like a botox experiment that had gone wrong! I managed to get an emergency appointment with the GP 0n 2nd January as they were concerned that I’d had a stroke.  I had a basic neurological exam and was told it probably wasn’t a stroke but that I had to go to A&E as soon as I could.  I went as I was told and was sat in a cubicle for 4 hours with nothing happening except for a couple of ECG’s.  I was then moved to a ward and I sat in a cubicle for 2 hours with nothing happening.  So I went home.  I had someone sitting with Dominic and it was 11pm. Nobody was concerned at the hospital so neither was I.

The next day I went to the A&E department of a neighbouring hospital and what a different experience that was!  I was seen within an hour of arriving and the on call neurologist came down to see me and went through lots of tests.  I had to walk in a  straight line, I had eye checks, I had to touch my nose then touch his finger then touch my nose again.  We had a bit of a giggle about it all to be honest.  I was slightly concerned that I was booked in for an MRI the following morning at 8am but on the whole it was all quite chilled.  This was the start of a diagnosis nightmare!  It took months and months of appointments and tests which resulted in a diagnosis of diabetic neuropathy (I’d had Type 1 Diabetes for 24 years). I was put on medication to help deal with the pins and needles and that was it.  My face righted itself over time and my wrinkles sadly returned.

Fast forward to 2013.  I’d been getting on with life. Learning to cope with the pins & needles and numbness that is there constantly.  I had a very bad episode of vertigo where I couldn’t lay down without throwing up. The GP put it down to a virus. I was beginning to get  more and more clumsy with bouts of dizziness.  Then I started to get tremors in my hands.  My hands would also jerk of their own accord.  I would be sitting on the sofa holding a cup of tea and I would suddenly throw it.  When asked why I did that I had no answer.  My hand just did it!  Perhaps I was possessed and an exorcism was needed? I had to go to the GP for a routine blood test for my diabetes and during the whole walk there I was incredibly dizzy and stumbling. I looked like I was really drunk, hanging onto walls and fences as I made my way there. A couple of people asked me if I needed help, one of them must have been about 80, but I was too stubborn to accept the help and carried on.  The nurse asked if I was OK and I breezily said “Oh yes, this is always happening.” I had the blood test and as I stood up to go, my legs went from beneath me and I ended up on the floor! The nurse helped me up and asked me if I thought I should see someone and I said no, I’d be OK. Then I slowly made my way out of the room, holding onto the walls.  I’d just got to the end of the corridor when the nurse grabbed me and guided me to the seats, telling me to stop being stubborn and to sit and wait for the GP to see me.  If I didn’t she was calling an ambulance.  So I sat!  The GP was really concerned and made an urgent referral to neurology then arranged for me to get a lift home.

My appointment came through and I got to meet Dr Shehu, the most amazing neurologist ever! He is wonderful.  He listens, he laughs, he has exactly the demeanour that I believe all Health Care Professionals (HCPs) should have.  He took a full family history and discovered that my paternal grandfather had MS. So this was the route we started to investigate.  The diabetic neuropathy diagnosis was dismissed immediately as it would not affect my face the way it had.  Following an MRI I was admitted into hospital in January 2014 for a course of intravenous steroids and a lumbar puncture. While I was in hospital I was told that the results of my MRI had come back and that they were 75% sure that I had MS.  The steroids were given over 3 days.  When I went in, I was using 2 crutches.  On my day of discharge I was walking unaided, albeit with my arms out like a tight rope walker!  All I needed now was the results of my lumbar puncture for a full diagnosis.  My appointment to discuss those results came through for October 2014.  That’s a long time to be in limbo, clinging to the hope that maybe they were wrong. But they weren’t.  It was MS. I cried when I was told.  Not because I was sad but because I was so relieved that after so long I FINALLY had a diagnosis and wasn’t going mad and imagining my symptoms.

So began my new life.

Living in the shadows

I don’t know if I’m just taking more notice now, but recently there seems to be a lot of negativity around disability, particularly relating to benefits. I am one of the many in this country who would not be able to live were it not for government assistance. You have no idea how incredible grateful I am for this help.  I do not take it for granted and I don’t see it as an entitlement.

Up until a few years ago, I worked and have always worked. Often I used to take my son into work with me in order to ensure I hit deadlines.  When I started getting poorly, I had to give up work as I was unable to guarantee deadlines and my cognitive function became impaired so I was more confused than ever!  I survived for nearly 4 years with very little help but in that time I lost my house and became riddled with debt.  At the point I decided I had to ask for help, I was literally counting pennies and deciding if we could buy milk that day or not. I couldn’t sleep for the worry.  I had bailiffs turn up to my door. I spent most days in tears and yes, I considered ending my life. My house had no carpets, I had to buy second hand uniform for my son, my son couldn’t go on some school trips because I couldn’t afford it.

I am proud and not very good at asking for help but I also found that there was a massive stigma attached to going into the benefits system.  Every day we hear headlines about benefit cheats and scroungers. I didn’t want to be one of those but times  were desperate.  As soon as I contacted the Citizens Advice Bureau, I felt as though a weight had been lifted.  I was advised of all the benefits the family could claim, help available to manage my debt and food vouchers for the local food bank. I don’t think I can find the words to describe my relief but it made me feel positive for the first time in a long time and I was able to sleep at night.

This all happened in 2015 and I am pleased to say that I am now debt free and living comfortably within my means.  I don’t go on holiday, I don’t have the latest phone, I don’t have the latest games console. What I do have is money to feed my family and a Motability car, without which I would be lost as I become less and less mobile.

It has taken me until 2017 to write this post as I am expecting a backlash from it and only now do I think I am able to cope with that.  There is a lot of judgement out there and I still find myself apologising for having to use the benefits system.   I know that there are a lot of people who do abuse the system and that is the main reason that it is tainted, but I’m writing this to let you know that we are not all like that. I am sorry that my circumstances have meant that I am using precious government money but I can not stress enough what a lifeline this has been to me and my family.

The system has stopped me living in the very dark shadows, something which I will be eternally grateful for.

Bring on the Unicorns!

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In March 2014, I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS).  This means that my MS has periods of being very active and causing a relapse where new symptoms start or symptoms get worse.  Usually, a course of steroids help and things get back to normal for a while.

In December 2014, my neurologist told me that my RRMS was aggressive (I know!  Me?! Aggressive?!! Never!) and I’d had 3 relapses in 9 months which is quite a lot.  To try and slow things down, we decided to try a course of Disease Modifying Drugs (DMD’s) which are designed to reduce the number of relapses.  With less relapses it’s hoped that I can get stronger in between them.

20150317_100850The DMD of choice for me is Tysabri.  It’s an infusion that I have to go to hospital for every 28 days.  They just pop a cannula in your arm (or attempt to use your hand twice before they give up as per this photo) and you sit there and read your book, drink coffee and chat for the next hour and a half.  It gives me a hot rash and makes me incredibly itchy, mainly on my scalp, but a simple Piriton tablet deals with that.

And that’s all there is to it.  I get very tired for 2 or 3 days afterwards but then I have 2 or 3 weeks of increased energy and my brain becomes a lot clearer and I can think clearly and try and plan things. A week or so before my next infusion is due I get very run down and tired and the whole cycle happens again.  My next infusion is next Tuesday and so far this year, I have had no relapses.

So where do the unicorns come into it?  Blame my mother!  This was our text conversation:

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As you can see, my Mum is full of sympathy and pity for me.  So each month, I have this infusion and hope that I will one day become a unicorn with a mane of rainbow hair and sparkles.  So far, it’s not looking great but I live in hope!

Always be yourself unless you can be a Unicorn. Then always be a Unicorn! 20141231_193408

Relationships

A few things have happened and caught my attention lately that have made me think about relationships.

I have recently been given a new status.  That of being disabled.  A word which I hate with a passion as I think I am very able thank you very much.  I just need help here and there with a few things.  This recent status change has led to lots of form filling and lots of questions.  All of which focus on the negative.  What I CAN’T do.  Which totally goes against the grain of my mindset as I prefer to focus on what I CAN do.  Can I get dressed without help?  Yes, as long as life can cope with me in clothes without buttons or zips, or even if pyjamas were acceptable in coffee shops.  Can I cook without help?  Yes, although the scars on my hand tell me I probably should really stay away from hot things.  Can I use my insulin pump without help?  Yes, but it takes me five times as long and I regularly manage to empty a vial of insulin over the kitchen floor.  So maybe I do need a bit of help to make life a little bit safer and easier.  Step up to the mark Mr E!

Me and Mr E married in September 2009.  The left side of my face dropped in December 2009 and there began years of problems resulting in my diagnosis of aggressive RRMS (Relapsing Remitting Multiple Sclerosis) which is the main reason for my ‘disabled’ status.  Poor Mr E did not sign up for this!  But he has stood by me and learned to step in when it’s needed and to help out.  Which leads me to the question, at what point does your partner become your carer?  A lot of these forms have asked me who my carer is.  I always reply that I don’t have one, just a very supportive husband.  But should I get some help in the house and in the kitchen?  Would that allow Mr E to remain a husband without the added responsibility, or burden, of being a carer too?

A recent tweetchat was about ‘diabetes and dating’ which made me very thankful to be in a relationship!  Dating is a minefield!  Let alone with any disability or LTC (Long Term Condition).  When I was single I never thought that men would look at me twice, I think they would now, but only to try to work out if I was drunk or not!  Hidden disabilities are so difficult.  I either look drunk or clumsy.  Although to be fair, I may actually be drunk…  How do you date with these added issues?  Do you pretend they aren’t happening?   Do you explain things straight away?  Do you set your date a test and monitor his or her reaction when you whip your blood testing meter out?  This week I read a tweet asking if there were any dating sites for those with disabilities or LTC’s.  Why should there be a separate one?  Perhaps because most ‘normal’ people just don’t get it.  Those of us in relationships or who are of a certain age (I’m not divulging mine but my son calls me a fossil) are more chilled and offer advice like ‘find the one who accepts you as you are’.  Easier said than done.  You have to get through all the awkwardness first and to kiss a fair few frogs before you find ‘the one’.

It’s not just relationships with partners that I’ve been thinking about.  In March I will be going to the PWD conference where I will be meeting lots of twitter folk.  I ‘met’ these twitter folk when I was fairly well and a lot have followed my progress through the tricky terrain of diagnosis and treatment.  To be able to last the whole day, I may have to use my wheelchair.  Will that chair change how people relate to me?  Will people see past it and realise I am still ditzy Jules…with wheels?  I think they will as they know my story.  But what about old friends?  If they see me in my chair will things change?  Will they be too embarrassed to ask about it?  Will they not be interested and not ask for fear of being bored?  Will they assume I don’t want to be part of ‘girls night’ anymore?  Will they just say ‘nice wheels’ and carry on as before?

I think that sometimes it is best not to think too much about these things.  Relationships are two-way.  If I am worrying about reactions etc, those reactions will be based on the signals I’m giving off.  I need to accept help and be grateful for it.  Although I feel like a burden and a let down to Mr E, should he ever be in my position, I would of course stand by him and support and help him.    Relationships are tricky at the best of times.  Accepting ourselves and our situation, whatever that may be, is the first step.

A Royal Review

It’s December, that time of year where most of us look back at the year and look forward to the next.

What a bloomin’ year it’s been! This time last year (2013) I had a broken hand from falling over and I was unable to walk in a straight line! The day before Christmas Eve I had a call from the GP to tell me that I had areas of inflammation on my brain and that they were arranging for me to be admitted into hospital for IV steroids. Little did I know that this would mean that within a few months I would get a diagnosis of Multiple Sclerosis (MS) and life as I knew it would change.

So why the title of this blog? Well, not only do I consider myself a bit of a Princess, but I am also officially terming 2014 as my Annus Horribilis. I had my diagnosis, I was left out in the cold for some months, I had three relapses and I still had a life to lead.

But as with all bad things, I have tried to look for the positives. Towards the end of this year, I started to see the MS rehab team who have taken so many worries away from me. One of my worst MS symptoms is that I shake and twitch, can hardly feel my left hand and I lack strength in my hands. Therefore managing my Type 1 diabetes was becoming a slight problem with regards to using my meter and my insulin pump. I also had similar MS symptoms to my hypos with pins and needles and feeling dizzy. As some of you may know, having an insulin pump is a little bit like signing up to a mobile phone contract and I’m only 2 years into a 4 year contract so getting a new touch screen pump was looking unlikely, especially as my DSN pointed out that I have people at home to help me use what I have. The MS rehab team firmly believe in getting me back to being as independent as I can be. Not relying on others who can’t always be there for me. And so they are taking up the fight on my behalf to get me a new pump and meter.

They have also organised physio for me. Oddly not to push me though. It feels more like they are holding me back! Exercise must no longer be looked at as a challenge but as a series of controlled movements. Pushing myself in the misguided belief of ‘no pain, no gain’ is not the thing to do. Instead I must relearn my ways of thinking. There is a theory amongst those living with long term medical conditions called the spoon theory. You have a certain number of spoons per day that you can use. These spoons are units of energy. And you must decide how to use them. You may think that getting up and getting ready in the morning is one spoon. Oh no! Getting out of bed is one spoon. Showering is 2 spoons. Getting dressed is one spoon etc. Sometimes you can have a relaxed day and only use some of your spoons, giving you the chance to carry them over to the next day when you need more cos you are seeing friends for coffee. But this is the fact of life now. Everything must be done in bite sized pieces. No more 3 hour stints of ironing! Oh no. 15 minutes then sit for 15 then 15 minutes more etc. Life has slowed down a bit but doing things this way has strangely meant that I am achieving more as I am not wiped out all the time.

My neurologist wants to start me on Tysabri in the new year with a view to giving me longer periods between my relapses. It comes with risks but after careful consideration I believe that the pros outweigh the cons.

I have also met new friends through social media who have helped and supported me this year. As have my existing friends. All my friends with diabetes have been fab with my MS. I don’t know what I would do without you all.

So, looking forward? Well, I start my new wonder drug in the New Year. I am learning to deal with life in chunks so I achieve more. I am getting a wheelchair to help me when I have bad days so I can still go out for long periods of time and not miss out on anything. Most of the time I will get by with my crutches which are there to help me do more, not hinder me. After 3 courses of high dose steroids I can pretty much control my blood sugars through those times now. I will hopefully get a new insulin pump. I still have all my family and friends. Life, in fact, is good.

Life for everybody is about learning and experiences. I am learning the same as everybody else is. Does a blue badge and a pair of crutches make me any different? Nope. I am still Jules and always will be. You are not getting rid of me that easily 🙂

Merry Christmas and a Happy New Year to you all!! xx

Originally written Dec 2014

Roche Insight Pump review

This week I have been to meet Helen, my lovely pump rep, who brought the new ‘Insight’ pump with her for me and my DSN to have a proper look at.

My first impressions were that the pump looked much nicer. It looked a lot smaller than the Accu-Chek Combo but in reality, the difference in size was hardly anything. What made it seem smaller was the sleekness of the pump. It is much more streamlined and has curved corners making it much easier to handle. It has also lost the protruding tubing connection. You know that bit that always gets caught on the lining of your pocket and digs in at night if you hang it on your pyjamas? Instead, this has been changed for a replaceable end to the pump casing which has the tubing contained. This keeps the tubing nice and neat and flush with the pump.

The next thing that got my attention was the screen. I know a lot of Combo users have commented that the current screen is not the easiest to read as it is quite small and dark. The Insight has a colour screen and is bigger, making it much easier to read. There is also the option to change the screen to show white on black or black on white which will be so helpful to those with vision issues. The buttons enable you to scroll through the menu and now have a ‘back’ button too so if you miss the option you need, rather than scrolling all the way through to find it again, you can go backwards. While we are on the subject of buttons, the new buttons are raised and much easier to press. The Combo buttons are very small and sunken to avoid being pressed accidentally. The Insight locks itself automatically so the buttons being accidentally knocked aren’t actually a problem.

The cartridges are the next difference. There will be two types. Prefilled glass cartridges of 160 units or manually fillable plastic cartridges of 200 units. In my opinion this is the only flaw as the current combo has 315 units. My cannula gets changed every 3 days and my TDD is 82. This exceeds both of the cartridges volumes. When I saw how easy the cartridge change was though, it made me realise that perhaps this would be something that I could live with. There is an automated cartridge filler now. It’s on a stand and you drop your cartridge in it vertically, with the connector to the insulin vial and press a button. The plunger bounces up and down drawing the insulin in and out so that you are left with a full, bubble free cartridge in about a minute. As the connection is different, there is much less chance of bubbles appearing.

So the pump itself looks and handles more comfortably. Replacing the cartridge it much easier and the new tubing connection makes the chances of bubbles much more reduced. Easy to read colour screen and the ability to scroll forward and backwards now.

As to its actual function, it has cut out some of the unnecessary steps. No more saying yes to a function then holding that fiddly little button down for 3 seconds. Cartridge changes automatically suspend insulin delivery so if you have a TBR on or are in the middle of an extended bolus it will suspend that and resume on cartridge reconnection, you don’t have to stop the pump and cancel the programmes.

The pump is as waterproof as the last. When it comes out of the factory it is classed as waterproof as it is fully sealed etc. But with use, there may be minute cracks that appear which would make it not as waterproof as when it leaves the factory. So although it will be ok for splashes etc and probably a drop in the loo (you know, when you have it in your back pocket ladies and have to pull your trousers down for the loo and your pocket contents empty out, phone, ipod, pump etc) it is not advisable to go swimming with it on. I think that Helen said any water damage is covered under the warranty anyway.

The meter has a full colour touch screen. It is bigger than the current meter but that is to accommodate the touch screen. It’s bigger but thinner and the case it comes with has the mesh bag inside to help with storage, like the Accu-Chek expert pump has. It has a status screen that is easy to view which shows you the number of units left in your cartridge and the amount of active insulin still in your system or insulin on board. The meter is rechargeable bringing it much more up to date. If you have a smart phone, you will be fine with this! There are also videos downloaded onto the meter which show you how to use your pump and meter, how to change your cartridge etc.

Infusion Sets are changing too! Not the cannulas themselves but the connection and the insertion method. There were no TenderLinks to see at the viewing but the FlexLink was. The introducer for that, the LinkAssist, has again been slimmed down and is much more user friendly. It certainly doesn’t look as scary as the old one! It has a pressure pad on one of its ‘feet’ so when it is in contact with your body it unlocks the system allowing you to fire it rather than having the fiddly locking and unlocking buttons. As the cannula is drawn into the introducer, putting it in the ‘fire’ mode, the needle comes out. Once fired the needle tucks back in making it safer from a sharps perspective. Also, as you don’t have to take the needle cover off, it is much better for needle phobics and I imagine for children too. The needle is hardly seen with this process. The tubing clips onto all the cannulas. The connector is flat and longer than some of the current ones making it easier to hold when connecting/disconnecting.

Overall, I was very impressed with the system. Roche appear to have listened to the users and made the whole thing much more user friendly. I have sight issues and trouble with my hands caused by MS but it brings similar usability problems as someone with neuropathy. This system would make my continued use of a pump much more possible. Due to contracts however, it looks like I won’t be able to get one as I am not quite 2 years into a 4 year contract. For now I will have to continue to rely on others to help me with the current pump. But I see no reason why the new Insight system wouldn’t give me more independence as I will be able to use it myself with its improvements and I think others will feel the same.

Hate the fact that I have to end on a negative but there is a big one. Release has been delayed AGAIN until the end of the year!