Adjusting. Hoping. Surviving. Befriending. Awakening.

This February is the perfect month for me to join up with A Chronic Voice’s link-up party; the prompts are so relevant to what I have been going through recently and will be contending with over the coming months: Adjusting. Hoping. Surviving. Befriending. Awakening.  I love having the opportunity to reflect on the prompts.

Adjusting

As regular readers will know, I have just been through life-changing HSCT treatment (have a look at my ‘HSCT Chronicles’ for more information).  This meant that I had time away from the family, being in an isolation room in the hospital for 3 weeks.  Although this was tolerable at first (I think because I felt so poorly), I have to admit that toward the end of my stay I felt on edge and ready to escape!  I have been out for just over a week now and learning to adjust to my ‘new normal’ has been tricky.  The aim of the treatment was not to rid me of any MS symptoms but instead to try and reduce the likelihood of further degeneration of my nerves and therefore progression.  I think that I had this vision in my head that, when I came out, I would be back to how I was when I first went into the hospital.  Actually, I am even more tired than usual and, perhaps unsurprisingly, because of that my usual symptoms are flaring a bit.  I guess that it is to be expected; I have just had multiple bouts of chemotherapy and a stem cell transplant after all!  All the literature says that recovery can take up to a year, if not longer, so I just need to take it easy I guess.  And learn to adjust and re-evaluate as I go.

Hoping

Also related to my HSCT treatment, is it bad of me to hope that I may see a tiny bit of improvement to my MS symptoms after the recovery phase is over?  I know that fixing my symptoms isn’t the planned outcome of treatment, but how I hope that I can have a tiny bit of what I used to have – a bit more energy, less ‘cog fog’ and better mobility.  I guess life would be boring if we didn’t hope.  Perhaps it is more realistic to hope that the treatment will have the desired outcome; reduced ongoing inflammation and therefore a chance to slow progression rather than stop it.  And, as a result of this, the hope that I can continue to be a present and active person within my family’s life: supporting the children and still having the odd ‘date night’ with my husband, so I can continue to show them how important they all are to me.

Surviving

This time last year, I had lots of plans; I knew that I was about to take the step into applying for early ill-health retirement from my job as an NHS Speech and Language Therapist.  I envisioned myself focussing on self-care and self-improvement: treating my body well and keeping my mind active by teaching myself a new language.  I thought that I might even eventually do a bit of private speech therapy work working hours that suit me and my health, even if that is just a couple of hours a week.  The reality?  I have just been surviving. Of course, I have had the recent treatment to contend with but I also think that I overestimated just how much work was taking it out of me.  I still have the fatigue and cog-fog even without the pressure of getting up at 6:30 am for work every day.  I have managed to establish a bit of a yoga routine to try and treat the ongoing spasticity in my legs, so I am proud of that.  I have all the German books that I need so when I feel ready to start my language learning, I can get going!  But, for now, I am just surviving and going at a snail’s pace. And that is ok.

Befriending

I am so lucky that I have brilliant friends; my time in the hospital showed me that, just when I need them, my friends are there to rely upon, offering support to me and my husband and helping with the kids. This year, I think that I need to concentrate on befriending both my husband and myself more.  When one of a couple is chronically ill, it is so easy to get into a bit of a rut.  But it it is important to keep the romance going, to show someone just how important they are to you and how much you appreciate them, despite the difficulties you may face as a couple.  Something that my husband and I used to do more of is just take time out to spend 1:1 time together listening to music and playing games such as Scrabble and Bananagrams.  We’ve got into a bit of a habit of Netflix box sets (which aren’t a problem as such – boxsets definitely have a place in my heart!) but taking some time to ‘reconnect’ is important.

Read More: Supporting One Another When Chronic Illness Strikes

As mentioned above, I am also a ‘new’ person myself.  I am still coming to terms and getting to know the Jen that I am now as opposed to the one I was last year.  She’s still there, but with all the changes and challenging times that I have been through recently, I feel ‘different’.  I guess it will take time to work out exactly how it might have changed me and how I might continue to change through recovery.  And befriending myself throughout.

Awakening

I guess that I am awakening to how to feel well in my new body, that still has MS (that will never go, unfortunately) but with up and down symptoms.  I have come out of the hospital with a renewed sense of purpose to be as well as I can be with my diagnosis.  I already meditate and do yoga and I follow a largely plant-based diet with no dairy.  There is a lot of research into the role that Omega 3 plays in reducing the likelihood of MS relapse and inflammation, with flaxseed oil being a good source.  I plan on having some every day whilst also upping the amount of strength building exercise I do when I feel well enough.  Whether I will achieve this, I’m not sure, but this is my plan!  I’m not going to push it, just have a general aim over the next year or so to awaken and become aware of how my body feels and to adjust my day to day activities as needed to feel as well as possible, whilst being accepting of my limitations.

Thanks Sheryl for the chance to take part on your link-up again 🙂

Till next time