Wednesday, 15 July 2015

Lemtrada, expecations and loving ourselves

I should probably put a disclaimer first and say all thoughts and opinions below are my own based upon my experience with Lemtrada and not the advice / thoughts or opinions of medial professionals.


There are a lot of things on various social media sites and discussion forums on Lemtrada and what you should or should not expect when you receive it. Fatigue, the rash, improvements and their longevity / time to make themselves known and just life with MS in general. A lot are positive and inspiring things said, but also a lot of negatives. It seems to me that despite Lemtrada not being marketed as something which WILL improve your current MS symptoms expectations seem to be set so much higher.


When I had the treatment I was relatively newly diagnosed, although I'd had symptoms for at least 2 years before that. My physical 'state' wasn't 'that' bad and for me it was the line in the sand that I was prepared to defend from against MS. Of course I had great hopes and expectations of the treatment and would have been as mad as a wet hen and feel really cheated if I hadn't seen anything - BUT (and it's a big butt ..... hence the diet) my goal was to stop it dead in it's tracks so it got no more from me, If this was as bad as it would ever get I was okay with that.


I had done so much research, read so many online resources and spoken to people who had the treatment to ensure I was forewarned and expected all of the during treatment symptoms, heart rate / BP / sleeplessness / fatigue / headache / rash etc so when some happened it wasn't a surprise or cause for concern and when some didn't I was a very happy lady.


I had done so much to offset the severity of these things, drinking the water amounts for weeks to accustom my body to the volume, vitamins and minerals to ensure everything left after treatment was in fighting shape, the Oxygen Treatments so those super oxygenated Red Blood Cells were super healing, and I continued with all of these regimes after treatment. Friday will be the end of week 8 and I'm still doing all of these things now because I haven't had the problems others have experienced if I'm honest I'm afraid to stop in case it all goes to hell. I don't ever want to go back to that place again, it was a dark and scary place to be when my own body was betraying me.


I've done some daft things, I've put myself in 'risky' situations since the treatment, especially for that first month when I lost my younger brother so very suddenly. Spending so many hours in a hospital ward bathing in Anti Bacterial Gel wearing a mask, gloves and apron thing was a dangerous thing to do 7 days after the treatment. Going to comfort my brothers friends on day 8 when they all hugged me, cried on me, kissed me again was dangerous even though I kept going and washing and putting anti-bac on. Ian's funeral was more of the same for that again - dangerous.


I've burnt the candle at both ends an a little in the middle as well, late nights followed by early mornings, tried to get too much into one day and not rested enough and been completely exhausted. I'm old enough to know better but I accept that I have brought these things on myself, yes it's what MS does to you making these things so hard, but it's not Lemtrada's fault that it's just too much, it's me being an idiot.


I've done professional photographic work for a wedding, it's exhausting to do, you bend and twist your body into so many unusual positions to get pictures, you're up and down, lying down and crouched in the middle all day, you climb stuff and dunk under things all in the name of  'getting the shot' over a 12-15 hour period and it's hard work. I'd forgotten how hard it all is as it's been a while since I've done a wedding and to wake up feeling like I'd been beaten up was a shock. All those muscles that haven't had that level of work out in a very long time, all screaming and hurting in outrage at me was a complete surprise, but once again that's a result of a few years life with MS, it's not going to miraculously be back to the old days again now I've had the treatment and it's not the treatment's fault that my body is no longer used to that level of exercise. Me overworking neglected muscle groups and paying the price is the same as that any normal healthy person would experience if they suddenly did some strenuous and intensive exercise that their body was not used to. This is NORMAL life not MS life - in MS life I would never have tried let alone managed it and paid the price.... I celebrate that :-)


I don't have cog fog or fatigue but I'd found a fix for that before treatment, the Oxygen Therapy really does work wonders on me and whilst it can be inconvenient and isn't terribly interesting I do it because it makes me feel good and like the supplements if I'm truly honest I'm a little afraid to stop - just in case.


Lemtrada isn't the magic bullet that makes everything immediately better. It's also something that I think you need to do as much as you can to support while it works it's magic.  I know we have MS and we have our challenges, physically, emotionally and financially and what I've done isn't necessarily possible for others. I think that eating healthily, cutting right down on alcohol, and moderate exercise, something gentle and not strenuous or overly exerting should be considered.


By the same token if you're feeling great don't think you're Superman or Wonder Woman and do yourself a mischief by doing too much (okay yes I know I'm a hypocrite :-) ...) and don't blame the treatment for the aches, pains, fatigue and weakness it causes when you do overdo it. Celebrate that you did especially if before you wouldn't have done so.


This treatment is a 'grower' it takes time to start establishing change to our condition and if we are lucky our myelin and Central Nervous System. It took a long time for MS to nibble away at our nervous system using it as food, the scarring (lesions) that it causes I liken to having a cut on your hand, it might be small and left alone it will repair potentially with only a small scar. But if you sit and scratch it and pick off the scab like it's your new hobby it will take a long time to heal and you'll end up with a much bigger scar than the injury was in the first place - it might never fully disappear - the bigger the scar the less likely it is to go away. MS nibbles and nibbles and nibbles until Lemtrada kicks it firmly in the mouth, knocks out it's teeth and stops the nibbling.


With the treatment we have steroids, they do really crappy things to your body, but also some amazing ones like bringing down inflammation in your brain and spine. This can knock you about or make you feel fantastic, expect this if you feel worse or better during and immediately after the treatment it's likely the steroids not the treatment or exacerbations of the MS.


Sleep - it's so very important to get the rest you need, the 8 hours a night we should strive really isn't a mythical concept it's actually really beneficial for us (yes again I'm being hypocritical)


Be positive, give it the time to grow and mature and your body time to heal, it took a long time to get as knackered as we are, it might take even longer to claw our way anywhere close to back. living every day with MS is a battle, it's a war and you need to ensure you have every weapon available in your arsenal to fight. Lemtrada is a bloody big Battleship of a weapon, but even battleships need ground troops, air support and a chef in the kitchen keeping the troops on board healthy. Look after everything in your army that's fighting MS, don't just depend on one weapon - please





I'm going to step down off my soap box now and shut the heck up, but I needed to get that off my chest. Apologies, love, air kisses, virtual hugs and anti-bac handshakes to you all xxx

4 comments:

  1. Tracy,

    I love this post! Happy to find you so well and weathering life's challenges with humor and grit. I will be sending warm thoughts your way for round 2!

    Take care :)

    ReplyDelete
    Replies
    1. Thanks Emma, one month and 4 days to go to Round 2 now - not that I'm counting :-)
      Hope you're doing well and that life is being good for you xxx

      Delete
  2. Hi Tracy

    I am based in Basingstoke and my neuro has suggested Lemtrada, It would be great to talk with you about the process etc.
    Harriet

    ReplyDelete
  3. Hi hazbob
    Perhaps I'm a little special but I can't find a way to add you on here so I can send you a direct message :-(Very happy to have a chat with you over coffee or by sharing my contact details. Where about in Basingstoke are you .... I'm familiar with festival place, the costa near the leisure park, Chineham shopping centre and the Sherfield on Loddon coffee shop at the post office :-)
    Tracy
    xx

    ReplyDelete

Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't...