Success, Hope and Positivity

When the sun is shining the world seems
like a better place - My garden this week

I’m now at the 6-week mark in my Enbrel journey and last week saw the Rheumatoid Nurse for a check up.  My ESR has remained low at 2 along with my CRP, which is at 4.  Medication wise I am now just on Enbrel 50mg, NO painkillers and NO PRED.   I am an Enbrel success story or so I am led to believe, of course what no one knows is how long my success will last.  For some the relief has lasted for 14 years or so, others still going strong at 5/6 years and yet for others it has lasted only a few months.  But I feel full of hope, overflowing with positivity and so so grateful for my success. What I must do now is remain positive.  When talking to the nurse about dos and don’ts her advice was ‘enjoy your life while your pain free’.  And she’s right there is absolutely no point in me worrying about what will or won’t happen – it’s an unknown - I have to enjoy every single minute of this pain free life.  I haven’t tried many meds for very long periods of time and it was always my Rheumatologists goal that I should be on a Biologic, I think his view and that of many other Rheumatologists is that it’s only the Biologics that work really well.  I think that a picture had always been built in my mind of a miracle drug, one with potential serious side effects, but still a miracle.  It never really figured in my thoughts that it wouldn’t work, oh I muttered the words ‘It might not work for me’ but deep down inside I always hoped, believed and remained positive that it would.  Should Enbrel fail me I will switch to another Biologic with the same hope and positivity that it will work and maybe for longer.

This is maybe easy for me to say or write because I haven’t yet had the disappointment of a drug that I pinned my hopes on not working for me.  I know many of my fellow RA’ers have tried many of the Biologics with no success and it must be hard to maintain hope and positivity whilst crippled with pain and fatigue going through the highs and lows of starting new medications which then has no effect. The stress of waging a constant health battle can get to you, day after day, week after week - It's easy to get down and depressed. The fear factor then enters the game, fear of the future, fear of nothing working this creates more stress and a negative mental state -- pessimism, feeling overwhelmed, being burnt out – and then this has a negative effect on your immunity. When you have a chronic long term illness you must have hope.  Without hope you have no future or at least it looks bleak and a positive attitude is a must when looking at treatment choices. There is also evidence that people who have a positive attitude, what is called realistic optimism, the fighting spirit… they live longer, do better…so never give up!

Now that I have enjoyed a respite from this dreaded illness even for these few short weeks I am not prepared to let in back into my life.  I have whole periods of time now where my illness no longer dominates my thoughts, I can exercise again, I can walk fairly long distances, I can open jars and bottles, carry heavy pans, change the duvet and dry my hair all without wincing in pain. I can get out of the bath without crying in agony and I can lift my Granddaughter and that fills me with joy when I have struggled for so long.  I can make plans for the weekend, for next week, next month and maybe even further ahead.   I am me again, I thought I was lost… but I wasn’t… I was just hiding under a cloak of pain and despair.

My walking route I take with my dog Joe
- about a mile - takes me 20 minutes

As usual comments appreciated, welcomed, even begged for!

Anxiety

Thought my hands were kind of OK
but every time I see them on film
 they look kind of wonky

Four weeks in on Enbrel I have now had 5 shots and continue to be doing very well.  However last week I did not 'feel' well at all.  It started at the beginning of last week on Monday I had strange feelings inside, a bit non descript, just ‘not right’and I struggled to decide what was wrong.  Of course I initially blamed the Enbrel, It’s always the meds, right? However as the week went on I had stomach discomfort, acid, a strange feeling in my chest, my head felt strange, I just didn’t FEEL right. I had my lab results back and great news my ESR was down to 2 and my CRP down to 4 couldn’t be better...but my serum calcium was high...oh no more worry.  My Dr quickly assured me that they were only just under normal and not to worry we'd just repeat in a month.  But the anxiety had all ready been added to my already growing pile. I had been worrying about having a chronic illness, worrying about administering the meds, worrying about if they will work, worrying about side effects, worrying if they would kill me, worrying about the future if no meds work and that’s without any day to day worrying about family and work. Most of my worry was subconscious I wasn’t sitting around biting my nails but it was simmering away under the surface.   Thursday came and by then I had convinced myself I was ill, didn't know what, but I was ill, so I was worried about that too.  I shouldn’t do my Enbrel - surely? So I phoned the rheumatoid secretary at 8.30am and burst into tears, she booked me in that morning with the Rheum Nurse who was wonderful, she calmed me down assured me I wasn’t being silly, just worried, and I did my own shot. Meds this week 50mg Enbrel and 2mg prednislone.  No pain killers.

But back at home the feeling of being ill was still there.  The turning point that made me look at it was on Friday after tweeting furiously about how I felt,  Lene from the Seated View tweeted me in her calm sensible way and said 'start to narrow down what’s not right then try to think about what makes you feel that way'.  So I did, and I realised that In the midst of this excessive worrying, I was  suffering with high anxiety, I had feelings of doom  and unrealistic fears too,  every time I felt a thump in my chest or a pain in my stomach it  increased my  worries.   When I looked at it calmly and logically I realised that it was GI based and I  came to the conclusion that all of the anxiety I had felt over the past few months starting when I went back into hospital over Christmas with my Penicillin allergy, and probably further back than that,  was causing the GI problems that I was experiencing.  Now I know that worrying is bad for you when it becomes excessive  it can lead to feelings of high anxiety and can cause you to be physically ill so I took action.  Here I was worrying about being ill, the side effects of medication, and a multitude of other every day things that may never happen and in doing so was undoubtedly harming myself in the process.  So this had to stop….What was I going to do about it. .  I tried to calm down, I told myself that my anxiety was making me ill so every time I felt tense I would take deep breaths and let my shoulders drop and I started taking my Lansoprazole in the mornings and I added Domperidone before each meal to try and ease the feeling of discomfort in my stomach and chest because it’s a vicious circle, if I felt symptoms I worried more and  felt worse. I kept myself busy, too much time to think can be very destructive, I exercised, did yoga and started to meditate and once I had accepted that it was self inflicted I started to feel better, the meds were helping and by Enbrel day this week ...I felt ok again, thats just OK, not fantastic, but OK.   Now I’m not saying it’s that easy for everyone and I still feel on the brink of it returning, its simmering under the surface  and if I’m not careful it could break through  but I am going to work really hard at reducing my stress and worrying and thus reducing the resulting anxiety for the good of my future health. I am going to carry on with my GI meds in the short term.

This turns my thoughts to others and It has disturbed me no end that many people on Twitter this past few weeks have been in meltdown, far worse than I have been experiencing. RA Warrior mentioned in Rheum Chat this week that 2 people had attempted suicide.  This is just tragic.  Who has failed these people, so that their despair has spiralled out of control.

So who is supporting the patient with a chronic long term illness emotionally, everyone is concerned about ESR, CRP, joint damage and med side effects but what good is remission of the disease if we are not well enough mentally to enjoy it.  It seems to me that the emotional side is left to those closest to the family and yet these are the very people that very often understand the least.

How are we expected to deal with these feelings? We are living with a chronic illness that leaves many living in daily pain with disability that makes lives near on impossible and fear of the future very real and we are told to make the most of it, it could be worse, be full of hope, it will be OK. We are bombarded with articles telling us we are going to die young, we are more likely to get  cancer, heart disease and whole host of furthers ills and worse still that the very meds we are taking to help us find remission could kill us too  - is it any wonder we are anxious, worried and often depressed.   The physical effort of coping with it is near on impossible when it’s at its peak but what about the emotional side that lingers with us long after our flare has subsided, who helps us then? 

I’m genuinely scared for the many people out there for whom the meds are not working, for the extra worry and anxiety they are feeling, for their despair that nothing can help them,
for the pain that is unremitting and for their fear of what the future holds for them.   I may yet become one of them because I am not complacent enough to believe that because my meds are working now they will continue to do so and I believe that even if my medication carries on working for me this emotional journey will continue to be as tough as the physical one has been so far.  

I don’t have an answer to any of this I just hoped that by writing this  it would help me evaluate all of those lingering questions and fears that have been swirling around in my brain all week and put them into context.

Fear of self injecting, either with a click pen or syringe, is very real for many people, including me,  and at request and in the hope that it will help some to overcome their fear or phobia I have filmed my last Enbrel shot. I have agonised over whether to post this or not my narrative is not great nor is the camera angle but unfortunately by the time I’d reviewed it the shot was done, you don’t get to have another go. Please excuse the very undignified pose and the amateur camera work it was filmed in the interests of education not fashion.

Comments...please, please...I need some encouragement...blogging is hard work!