The struggle with long Covid… Accelerate made a real difference

Life before Long Covid

I just want to give you a quick insight into my life before Accelerate. I was a carer for dementia and Alzheimer’s patients I enjoyed my job and my clients so much was one of the most fulfilling and rewarding jobs I have ever done.

Then Covid happened and I was working long hours. I contracted Covid on the 25 November 2020. I was hospitalised for 8 days and on lots of medication – to name a few – steroids, antibiotics, painkillers and water tablets as my legs and arms swelled up so much. I was also on oxygen throughout my time in the hospital.

I got home and still felt very poorly, come 25 January 2021, I had to be hospitalised again and spent another week in hospital on medication and oxygen before returning home. The doctors in hospital diagnosed me with Long Covid.

Living with Long Covid

I never seemed to recover was constantly out of breath and in extreme pain. It was like something I did not think was possible to live with, and my life seemed to be on hold trying to deal with everything that came along with Long Covid.

The doctors did not have any answers to the muscle pain, swelling, breathlessness, fatigue and weight gain (the list is endless). I had gone from working and caring to now being the one who needed caring for at the age of 53.

For the next 2 years my health seemed to be on a downward spiral. We needed to sell our beautiful home as I could no longer use the stairs nor steps, I needed a bungalow where I could maybe get around.

My whole body had swollen to such an extent that my legs were weeping and cracking. No matter what my husband and I bought or did to improve the swelling and breaks in my legs, there were no doctors to ask and we were left to get on with it as there was just no help for people living with Long Covid as nobody knew how any one person from another was affected.

Referral to an oedema clinic

I had to call a doctor out as I just could not face going back in to hospital, it was a locum doctor who could not believe what we were going through and said it had to change. He said I had to see an oedema clinic and get some help. He spoke to my doctors as they have an oedema clinic upstairs but I was not able to attend as they had no availability which, as it happened, worked out to be the best for me hands down.

I got an appointment to attend Accelerate in London. I was so worried about how I was going to get there but my husband and I arrived to the most wonderful place. I could not walk two metres without getting out of breath and having to rest, my legs were so swollen my feet had holes underneath where I had lost so much skin and my legs were weeping and smelling so bad I could not possibly go anywhere as they would leak through the dressing my husband and I were putting on.

My life saving experience

The moment we arrived it was a total haven for me I felt total relief, the moment these nurses just spoke to me and assured my husband and I that I will get better and they were going to be with me all the way I cried for days. The whole professionalism of this team seriously, I think, saved my life.

I was in such a bad way upon arriving at the hospice, the nurses would meet me at the reception with a wheelchair. I felt such a failure to have to get in a wheelchair but they made me feel it was OK as there was no way I would have been able to do the walk from reception to the Accelerate clinic, as I had to travel there every day for the first couple of weeks to have my dressings changed as they were soaked through by the morning.

It all started to to get better after just three weeks. I would then attend every 2/3 days. I enjoyed going to Accelerate as I had not been out of the house since contracting Covid / Long Covid. I was looking forward to going and getting this treatment from a team that I could not praise enough. Even without knowing it, these nurses gave me back my life and my confidence. I felt that, just maybe, life was worth living as I had not been living, I had been waiting to die if the truth be told.

I had felt my life was finished as I did not want to continue with the pain and no mobility, it was a total existence. Arriving for one of my appointments in July 2023 at the clinic, the nurse said to me I did not look well and she called in another one of the team who also said I needed to go to hospital as I was very swollen and my breathing was laboured. I left it till the next day and had gotten worse by then so my husband called an ambulance and I was rushed with blue lights with respiratory failure.

If my husband had not listened to these ladies I most probably would not be here as I had carbon monoxide poisoning and was not in a good way. Another long week in hospital and I have now got to use oxygen and a mask to keep this at bay.

The brilliant Accelerate team

Thank you once again to this wonderful team for being the kind, considerate and caring professionals they are or I would not be writing this. Since my hospital stay in July I still attend Accelerate and they keep an eye on my oedema.

My husband and I have learned so much from this team of nurses at Accelerate, it has totally changed my life for the better. In November 2023, I was able to walk to Accelerate from the reception on my own – it is such an achievement for me. I was out of breath and I did have to stop due to my long Covid but not my oedema as my legs are feeling the best in over three years.

Forever grateful to the Accelerate team.

Trudie Castelynn